Childhood cancer is a vicious and unforgiving disease, parents forced to watch in anguish as their own flesh and blood suffers more than words can describe......Andy Whelan

The Jessica Whelan Story - February-November 2016

Jessica with dad, Andy

This is a sad story about an extremely beautiful and brave little girl. In fact, it's the most upsetting webpage that I have ever worked on. I'm no macho man, but if I were, I suspect I would have still cried bucketfuls of tears as I worked my way through this heart breaking story. In between my tears, I have prayed for the soul of Jessica and for her extremely brave parents and other family members. Remember, tears are prayers too.

Neuroblastoma - We all need to pray against this lousy Satan created disease that is killing young children. This story (which is all too common these days) is beyond sad. If you've got healthy kids, thank God for them. Do it now!Every day I pray against this evil disease, but it continues to exist. Maybe there aren't enough of us praying. Please, if you do pray in the morning, please add this to your prayer list. Sadly, most people who read this won't bother, and little girls will continue to suffer, then die.

In some of the discussions on the site that this story came from, Christians were saying, as they often do, that this has cast doubt on their faith stating that they don't believe a good God would allow this to happen to an innocent child. I must admit that I too ask the question and I don't have an answer. We, the human race, tend to be scientifically based in our reasoning, in that we always need to be able to work something out before we believe it, but that shows a weakness in our faith. We cannot ever understand God and why He does what He does. A four year old girl has not had the time to become a sinner, so this couldn't be punishment, although God doesn't punish our sins. He prefers to work towards our repentance then forgiveness.

We might not be able to compute it in our traditional way of thinking, but that's because we are approaching everything from a human perspective. True believers will believe that God does things His way and for His reasons. "My ways are not your ways". Isaiah 55:8 & 9 - “For my thoughts are not your thoughts,neither are your ways my ways,” declares the Lord.

9 “As the heavens are higher than the earth,so are my ways higher than your waysand my thoughts than your thoughts." None of this makes me any less sad about Jessica, however. I will pray for her and all of those in her situation again tomorrow.

For reasons best known to Himself, God has decided that I should have neither a wife nor children, but that doesn't stop me from loving the children around the world. I believe the Lord blesses us all with children, and I thank Him for that.

Fly high my beautiful princess, watch over me, mummy and James. Ride free on horses in heaven and enjoy being with loved ones and free from your pain.

I will never forget you and I am honoured to call you my daughter. I love you more than words can convey, much more than you will ever know.

Goodnight Jessica Mae, sweet dreams, rest in peace.

Jessica Mae Whelan (aged 4)

This is from Jessica's heartbroken dad, Andy:

As a photographer it is important to capture the truth and the reality of a situation, too easy it becomes to capture the joy of life whilst discarding the torture that we see.

This is the hardest photograph I have ever made, it is in fact my own four year old daughter. A few days ago she was given what is most likely only a few weeks to live after a battle against cancer that has been waged for over twelve months. This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away whilst she rode out this searing pain in solitude. This sadly, for us as a family, is not a sight that we see rarely. This is now a familiar sight that we see regularly through each day and night, its frequency now more often. This is the true face of cancer, my baby girls blood vessels protruding from beneath her skin, a solitary tear running down her cheek, her body stiffened and her face contorted in pain.

I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in it’s context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.

The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.

If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.

Neuroblastoma is a type of cancer that starts in certain very early forms of nerve cells found in an embryo or fetus. (The term neuro refers to nerves, while blastoma refers to a cancer that affects immature or developing cells). This type of cancer occurs most often in infants and young children. It is rarely found in children older than 10 years.

To understand neuroblastoma, it helps to know about the sympathetic nervous system, which is where these tumors start.

About the sympathetic nervous system

The nervous system consists of the brain, spinal cord, and the nerves that reach out from them to all areas of the body. The nervous system is essential for thinking, sensation, and movement, among other things.

Part of the nervous system also controls body functions we are rarely aware of, such as heart rate, breathing, blood pressure, digestion, and other functions. This part of the nervous system is known as the autonomic nervous system.

The sympathetic nervous system is part of the autonomic nervous system. It includes:

Nerve fibers that run along either side the spinal cord.

Clusters of nerve cells called ganglia (plural of ganglion) at certain points along the path of the nerve fibers.

Nerve-like cells found in the medulla (center) of the adrenal glands. The adrenals are small glands that sit on top of each kidney. These glands make hormones (such as adrenaline [epinephrine]) that help control heart rate, blood pressure, blood sugar, and how the body reacts to stress.

The main cells that make up the nervous system are called nerve cells or neurons. These cells interact with other types of cells in the body by releasing tiny amounts of chemicals (hormones). This is important, because neuroblastoma cells often release certain hormones that can cause symptoms (see the section, “Signs and symptoms of neuroblastoma”).

Neuroblastomas

Neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system, so they can be found anywhere along this system.

A little more than 1 out of 3 neuroblastomas start in the adrenal glands. About 1 out of 4 begin in sympathetic nerve ganglia in the abdomen. Most of the rest start in sympathetic ganglia near the spine in the chest or neck, or in the pelvis.

Rarely, a neuroblastoma has spread so widely by the time it is found that doctors can’t tell exactly where it started.

There is a wide range in how neuroblastomas behave. Some grow and spread quickly, while others grow slowly. Sometimes, in very young children, the cancer cells die for no reason and the tumor goes away on its own. In other cases, the cells sometimes mature on their own into normal ganglion cells and stop dividing. This makes the tumor a ganglioneuroma (see below).

Other autonomic nervous system tumors in children

Not all childhood autonomic nervous system tumors are malignant (cancerous).

Ganglioneuroma is a benign (non-cancerous) tumor made up of mature ganglion and nerve sheath cells.

Ganglioneuroblastoma is a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, similar to neuroblastoma, as well as areas of more mature tissue that are similar to ganglioneuroma.

Ganglioneuromas are usually removed by surgery and looked at carefully under a microscope to be sure they don’t have areas of malignant cells (which would make the tumor a ganglioneuroblastoma). If the final diagnosis is ganglioneuroma, no other treatment is needed. If it’s found to be a ganglioneuroblastoma, it’s treated the same as a neuroblastoma.

In a heartfelt message, Jessica’s father Andy Whelan posted on his daughter’s dedicated Facebook page the news that she had “finally found her peace”.

“I feel both sadness and relief in informing you that Jessica finally found peace at seven o’clock this morning. No longer does she suffer, no longer does she feel the pain of the physical constraints of her body.

“Now my princess has grown her angel wings and has gone to up to play with her friends and loved ones. She will now watch down over her little brother and ourselves until one day we are reunited again,” he wrote.

Mr Whelan thanked everyone who had been a part of the family’s journey with Jessica, and asked for privacy following her death and signed off as “a heartbroken daddy of the most amazing and beautiful girl”.

Neuroblastoma is rare form of cancer that commonly affects babies and children under the age of five. It is a cancer of the specialised nerve cells and is most commonly found in the adrenal glands of the abdomen, and the nerve tissue that runs alongside the spinal cord, in the neck, chest, abdomen or pelvis, according to Macmillan cancer support. Less than 100 children in the UK are diagnosed with it each year.

Earlier this month Mr Whelan had shared an image of Jessica reeling in pain, entitled “the real face of cancer”.

“This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away while she rode out this searing pain in solitude,” he wrote at the time.

The family had set up a GoFundMe page for Jessica after being told she had months to live, to be able to pay for as many enjoyable life experiences as possible before her death. The family closed the donation campaign two weeks ago after Jessica began to deteriorate, at which point people had donated over £97,000 to Jessica’s cause.

Jessica was diagnosed with stage 4 high risk Neuroblastoma September 23rd, 2015. This page has been created by her family to provide updates in her progress in this fight against cancer.

As Jessica was diagnosed some months ago now I will try and link posts from my personal page to here to show the time line of events.

Please feel free to share this page amongst your friends and family as raising awareness of this cancer and it's affect on us as a family is our aim.

Thank you.

February 15th, 2016

Jessica is back home now after finishing her final course of TVD chemotherapy. We have a couple of days at home now before going back to Royal Manchester Children's Hospital on Wednesday for a repeat of all her scans.

These scans are vitally important to us as they will show if this additional two courses of a different type of chemotherapy have managed to rid Jessica's body of the metastatic disease (secondary cancer). The primary aim for all the courses of chemotherapy is to remove all of the secondary cancer before she is able to go for surgery on the primary tumour.

The last scans Jessica had were not as we had hoped and there was still quite visible metastatic disease. We are hoping and praying that this time around we have some positive news and can plan for surgery.

Jessica will be going into hospital on Wednesday where she will have a general anaesthetic to allow a bone marrow aspirate and a trephine biopsy. Following that when she is in recovery she will be injected with a radioactive tracer in preparation for her MIBG scans.

On Thursday Jessica will again visit hospital this time for the first of two MIBG scans and also for an ultrasound of the primary tumour. Friday she will also return for what is hopefully her last visit for a week and she will have her second MIBG scan and a CT scan.

It will take up to a week before we find out the full results of all of these tests and it is then that we will find out the next plan of action. If all is as we hope then Jessica will be booked in for stem cell harvest followed by surgery on her primary tumour. If however the metastatic disease is still more than our Oncologist wants then he will remove us from the clinical trial we are currently on to allow further courses of chemotherapy.

Jessica can stay on the clinical trial and still go to surgery with metastatic disease remaining however the less disease that she goes into surgery with offers a better long term chance of surviving this cancer. It is our Oncologists call based on these results as to which avenue we take. Fingers crossed that he does not need to make this call and Jessica has cleared her body of the metastatic disease.

February 15th, 2016

Absolutely love this picture (taken yesterday) Jessica decided she wanted to use her friends make-up and put some on. This is the outcome. Jessica also tried to put mascara on but I had to remind her that she hasn't got any eyelashes! Her response was "oh yes mummy, I forgot! Silly me"

A lot of our friends and family now know what this actually is but for those of you that have never heard of it or know little of it, like ourselves when Jessica was diagnosed, the attached link is information regarding this cancer.

February 17th, 2016

A bit of a setback today as we came to RMCH for a bone marrow aspirate and trephine biopsy as well as an injection of a radioactive tracer. Unfortunately on checking Jessica's blood counts we have found that she needs a transfusion of blood and platelets. These two combined add up to nearly four hours and so we do not have time to fit everything in today. Instead now Jessica is waiting on bloods and platelets being delivered and she will also have her injection. The biopsy will have to wait until next week now which leaves us fretting over results even longer. The transfusion is a must today without delay as the counts are that low. The injection is also a must as it has been tailor made for Jessica in another country and has been imported for use now and therefore leaves only the biopsy with possibility to delay.

February 20th, 2016

Feeling a lot more like herself today! Jessica still has a fluctuating temperature, spiking again this evening so she will not be home until at least Monday night now as per protocol. Her mucositis is unfortunately worsening, the ulcers in her mouth growing and spreading. It is now to the extent that she hardly talks as it causes her excruciating pain, she cannot swallow even her saliva and so she is constantly spitting it it out. Drinks wise she has physically drank no more than fifty millilitres in the last twenty-four hours and as such is now having dioralyte to keep her hydrated as well as now fluids through her nose tube.

As you can see though she is hardly letting any of the above get her down and is quite happy entertaining the nurses from her isolation room.

February 22nd, 2016

Another day and still fluctuating temperatures. Her blood cultures have come back clear after the forty-eight hour period which would suggest that her temperatures are being caused by a viral infection. The doctors are going to keep monitoring her until tomorrow and if her high temperatures have not stabilised then Jessica will have an ultrasound to look for possible infection. The ultrasound is just routine procedure if the cultures are negative and the high temperatures are still persistent after a number of days.Jessica has been moved from her temporary ward back up to ward 84 this morning and is a lot happier now as she can see her friends and she is no longer confined to an isolation room. She is however a bit lethargic at the moment and suffering from sickness caused by her mucositis which is still causing her great pain as the morphine wears off. She is currently having a platelet transfusion as this last course of chemotherapy she finished a week ago has hit her really hard. She does however still have bursts of energy and is making the most of now not being in isolation and being able to go to the playroom.

We are waiting to hear back from Dr. Penn, Jessica's Oncologist, as to what effect this will have in regards to her upcoming bone marrow aspirate and trephine biopsy as the anaesthetist may not allow a general anaesthetic if she is still spiking these high temperatures. We are praying that we can either get these temperatures down by Wednesday morning and/or still be allowed for the biopsy as the results take up to a week to receive and we are already a week delayed in having this biopsy.

24th February, 2016

Jessica has managed to go all day today without going above 38 degrees so hopefully (fingers and toes crossed), she is over the worst of whatever she had and she is on the mend.

As previously mentioned her blood cultures have come back negative of infection and today she has also had a CT scan of her chest and an ultrasound of her abdomen to see if any infection could be seen. Both have these have come back as clear and so reaffirm that it was most likely a viral infection.

Jessica was eventually allowed to have a general anaesthetic today to allow the trephine biopsy and bone marrow aspiration. Now it is just a waiting game of up to a week to hear what these and her previous scans show.

She has been in good spirits today and enjoying playing with friends on the ward, here pictured with Amy who was recently diagnosed with Leukaemia. Amy was showing off her new phone that she got for her birthday so Jessica decided to pinch it for a bit to try out some of the games.

29th, February, 2016

Jessica managed to get up to the stables for half an hour this evening, helping to feed the horses and spending time with her favourite, Bobby Sox. She only managed about twenty minutes or so before being too tired to carry on and wanting to go home but it was great to see her up and about for even a short time.

March 2nd, 2016

Heart warming moment earlier this morning as Jessica stood looking out of the window softly singing Frozen's "Do you want to build a snowman".

Twenty-four hours from now me and Nicki will be sat in front of Jessica's Oncologist finding out the results of her scans and seeing where we go from here with her treatment. It has been a stressful and worrying week as the day gets closer and now we are counting down hours it is even more unbearable.

As you can understand even the "good news" still holds a lot of danger and uncertainty and we would be hearing of side effects and dangers of future treatment. We may be slow to respond and update people as we ourselves come to terms with what the future holds.

Fingers, toes and everything else crossed!

March 4th, 2016

A fantastic and much needed morning of fun in the snow.

Jessica woke us up this morning with a beaming smile exclaiming it was snowing. Thankfully today it kept snowing and didn't melt quite as quickly as the other day. We all managed to get out as a family and had great fun on the field throwing snowballs, making snow angels and building a snowman. Jessica singing songs from Frozen as she played and built her snowman, complaining that we had run out of carrots for its nose, naughty daddy for not being prepared for a snow storm.

This afternoon her best friend Orla has also come to visit, much to the surprise of Jessica and it has been a great boost for her. Beteween them they have baked cakes and trashed Jessica's bedroom playing with Barbie.

Jessica is worn out now and I think it is time for much needed cuddles whilst watching movies.

Yesterday, 3rd March, is now another date we as a family will probably never forget. Yesterday was the day we sat in front of Jessica's Oncologist with hope and determination. Yesterday was the day that we sat devastated by the news that the scan results were not the news we wanted.

The secondary cancer still remains, it has reduced a bit but nowhere near the amount that was needed. Jessica can now no longer stay on the clinical trial that she has been on since September and we must now make a decision as to put her on a different clinical trial.

The previous clinical trial offered her around a fifty percent chance of surviving this cruel and horrible disease, the new clinical trial however does not offer anywhere near these odds. Jessica cannot stay on the previous clinical trial as it involves surgery and high dose chemotherapy, stages of treatment that Jessica is not ready for due to this remaining metastatic disease. Her oncologist has been open and honest with us and has advised us that although there is still a slim chance of survival with this new trial, we are now most likely looking at prolonging life with as good a quality as possible.

Our world was rocked by this news, Nicki and myself are both in pieces but staying strong for Jessica. We are clinging on to the hope that there is a chance of survival, however slim it may be, whilst also preparing ourselves for the reality of the statistics, enjoying life as best as is possible whilst still maintaining treatment that will give her a good quality of life.

We were in tears as we spoke to her oncologist about what the future holds and about the type of life we want to be able to offer Jessica. Talking to him about possibilities of making time for holidays to create much needed distractions and happy memories. Further talk of referrals to charities such as Make-A-Wish, charities I never before really considered needing, bringing home further the reality of where we are now at.

We go back to hospital on Monday to sign consent forms and to start Jessica's stem cell harvest. Once forms are signed we can enter onto the new clinical trial and start a new chemotherapy as soon as possible.

Me and Nicki would like to thank everyone for messages asking about yesterdays results, many we haven't replied to whilst we consider this latest news. We have spent the last twenty-four hours letting this news sink in whilst speaking to family and friends. It still has not hit us fully the true weight of this news and have had support offered to us and had our Macmillan nurse come visit us at home today.

We have however tried to make the most of todays weather to create a distraction, playing in the snow and baking cakes and spending time with friends.

March 6th, 2016

Jessica has had her nails done ready for the week ahead. Back to hospital tomorrow to sign consent forms and start stem cell harvest. We will also meet Jessica's oncologist and Macmillan nurse again to talk through once again the upcoming treatment.

March 8th, 2016

One year ago today, Jessica showing off her new hair cut. Only four months later Jessica began to show signs of the diagnosis we now have.

March 8th, 2015

Jessica's stem cell harvest is well underway now. It has been another early morning for Jessica and she is starting to get fed up. It was a long day for her yesterday undergoing MRI scans, X-ray, Echo and ECG as well as various meetings with Doctors and the research team.

Her hickman line is very positional and only bleeds back in one certain position. Unfortunately this machine takes four hours to harvest her stem cells from her blood and she has to stay in this exact position this whole time or the machine has a temper tantrum. She is getting bored now and just wants it to finish but on a positive note her stem cell counts are so good we may get all we need in one sitting rather than the planned two separate days. We will find out later today if we can avoid a repeat of this tomorrow and instead have a day at home.

No hospital tomorrow!!!!! We had a phone call this evening to inform us that they managed to get enough stem cells today to not need a repeat harvest tomorrow. Jessica is happy about that as it means no 6am wake up call for her. As a treat tonight she is watching a DVD in bed. Her normal bed time is seven o'clock so she has had a bath, fresh pyjamas on, Alice in Wonderland on DVD and a lie-in in the morning!

The side effects of Jessica's upcoming treatment.

We have the results of the BEACON phase iib Neuroblastoma trial randomisation. Jessica will undertake six twenty-eight day cycles of chemotherapy using a combination of Bevacizumab and Temozolomide.

She will have scans and tests after every two cycles of chemotherapy to monitor the response to this treatment. The good news about this combination of drugs means that barring for high temperatures, infections, routine scans etc., Jessica only has to attend hospital two days out of the twenty eight day cycle. The Bevacizumab has to be administered in hospital as an outpatient but the Temozolomide can be administered by us at home.

This is fantastic after our recent news of most likely only prolonging life as it allows more time at home even whilst undergoing treatment.

Of course, like all chemotherapy there are still side effects:

Bevacizumab side effects:

High blood pressureSevere diarrhoea - affects up to one in three peopleFatiguePain and weakness affecting the joints, muscles, chest and abdomenNumbness or tingling in fingers and toesSlow wound healingProtein in the urineMucosal inflammation or inflammation of the mouthIncreased risk of bleeding and internal bleedingPoor appetiteNausea and vomitingAlteration in speechFeverEye disordersChange in sense of tasteDry skin, flaking and inflammation of the skinRunny noseWeight decreaseBack painPelvic painHair lossA reduction in white blood cells (Neutropenia)A reduction in red blood cells (Anaemia)A reduction in platelets (thrombocytopenia)

Other important side effects of Bevacizumab:

As it has previously mainly been used to treat adults it is not known whether it will have any effect in the growth of bones.Cases of osteonecrosis have been observed in patients under the age of eighteen. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. With too little blood, the bone starts to die and may break down.

Temozolomide side effects:

Nausea and/or vomitingA reduction in red blood cells, white blood cells and platelets as mentioned above for BevacizumabInflammation of the gums and other membranes and liningsWeight lossHair loss

Other important side effects of Temozolomide:

There have been some serious but rare cases of liver injuries including some with fatal outcomes experienced in patients receiving Temozolomide.

The majority of these side effects and dangers Jessica has already had to contend with or been in danger of contending with in her previous chemotherapy regimes but there are a few new ones in these two drugs. Hopefully Jessica can get through these six cycles with as few of these side effects as possible but as always it's good for us to be aware of the dangerous ones and what to look for to catch them early.

Treatment for Jessica starts next Tuesday!!! Here is to fighting back!!!

March 11th, 2016

Jessica was also yesterday featured in yesterday's Lancashire Telegraph following her visit to Burnley Police station.

We have since found out we may also have the opportunity to visit the Lancashire Police Headquarters in Preston. I can imagine Jessica would be extremely happy to take them up on this offer as she had an amazing time last week.

A massive thank you to Burnley Police for inviting Jessica to spend time with them this morning and explore the station and courts. Jessica had a fantastic time locking people up in both handcuffs and cells and even mummy could not escape the handcuffs.

Jessica was given a tour right from the police reports room, through custody, prisoner cells, interview rooms and the court room. She met a number of officers who were all brilliant with her, showing her around and allowing her to get into the vans. She was even introduced to two police dogs although we all stood fairly still for one of them, a German Shepherd, amazingly trained but fearsome all the same.

Once more thank you to all involved, for making such an effort with her. Jessica absolutely loved it and wants to return and lock up some more baddies.

12th March, 2016

A couple more pictures from yesterday, having lunch out after our visit to Burnley Police station, Jessica wanting to make use of the play area.

We are having a nice chilled out day today to allow Jessica to recover from yesterdays antics. Sadly as energetic as she can be, a few hours activity such as yesterdays really takes it out of her. She is now suffering from pain in her joints and at the tops of her legs and she is very tired.

A few days of relative quiet now, barring a small trip tomorrow to meet Jessica's godfather who is helping to arrange the charity boxing match. These few days rest will hopefully put her in good stead to start her next lot of treatment starting on Tuesday.

March 13th, 2016

Jessica went to visit her godfather, Tom, this morning to see him and others training at Fit2xl for the upcoming charity boxing event that has been set up for Jessica.

She had another fantastic and high energy morning, copying the exercises and getting in the ring to show off her skills. Tom was no match for Jessica and she had him on the mat a few times, overpowering him with a flurry of punches.

It was emotional meeting Baz and Bev, and others who are doing so much to help Jessica fulfil her dreams. A massive thank you to all these that are willing to put so much time and effort in to this fundraising.

March 14th, 2016

We have set up a new Just Giving page to raise funds for Jessica. The page is also running alongside the upcoming Combined Uniformed Services boxing event.

Since this diagnosis we have learnt the value of memories that we hold close. Now even more since these latest results we know the importance of creating future memories, making the most of every moment, grabbing every opportunity and making the most of it.

Click photo for link

Through all of this treatment Jessica has constantly worn a smile, sometimes weary, sometimes pained but always a smile. We would love to fuel this smile further and all of your fundraising attempts have so far greatly helped to do this.

We would also like to take the opportunity to thank each and every one of you for all your support and fundraising efforts, past, present and future, we have not always been able to thank you personally but it is truly appreciated and very humbling.

Thank you from Jessica and all of us as a family xx

March 16th, 2016

Jessica has today been featured in the Accrington Observer.

This fundraiser was held some months ago now and the grand total from this amazing effort was £4000. The Kuon Ji Ju Jitsu Club has done numerous fundraisers for various charities in the past and it was amazing that they offered to also help Jessica. Jessica's Granddad is a Sensei at the club and Jessica loved going to the presentation of the cheque and taking part in some Ju Jitsu on the night.

A massive thank you to the club, everyone who took part and to the sponsors. We as a family were overwhelmed with the amount raised and left speechless and very emotional.

Click the pic for link

Jessica was also yesterday featured in yesterday's Lancashire Telegraph following her visit to Burnley Police station.

We have since found out we may also have the opportunity to visit the Lancashire Police Headquarters in Preston. I can imagine Jessica would be extremely happy to take them up on this offer as she had an amazing time last week.

Yesterday Jessica started her new treatment at Royal Manchester Children's Hospital. It was a long day as we finalised all the details to enable her to be on the trial and we were all wiped out when we got home, all opting for early nights.

Jessica as usual was a star, despite boredom and tiredness from an early morning. We learnt how to make and administer her chemotherapy at home as every four weeks we now have to give a five day course at home. We also brought home the protective equipment to allow us to do this and now our kitchen well and truly looks like a pharmaceutical laboratory.

Today she has woke up in reasonably well health and high spirits, hopefully this will continue through treatment and allow her to enjoy going out rather than being stuck inside unwell.

Our daily regime this week now involves a bit of dress-up!!! Jessica thinks I look silly dressed like this, I agree ha ha.

Being able to do this at home does however mean we can spend even more time away from hospital and enjoy the days that Jessica wants to go and do something.

March 17th, 2016

Jessica seems to be coping really well with this new treatment and as yet has seemed to suffer no ill side effects. Today was just too nice to stay indoors so we decided to get out for a walk up to the park and pop in to visit Jessica's and James' great grandparents. We are back home again now in time to once again play dress-up and administer chemotherapy. This new treatment being very much based at home is still such a relief as we can now use days like this to get out rather than travelling to and from Manchester for treatment.

March 18th, 2016

Been up to the stables this afternoon with Jessica and James. I absolutely love the bond they share, the love they have for each other.

March 21st, 2016

We surprised Jessica today, setting off this morning, unbeknown to her, for a day trip to the Blackpool Zoo.

Jessica has always loved the zoo, the open space and the animals. She surprises us on each visit knowing the breeds of animals that we would not expect her to know. The last time we were here was in June last year, a few months before she was diagnosed. She has been asking recently to visit again and so was thrilled with the surprise.

We took her push-chair with her so as not to tire her too much but she still returned home shattered, sleeping in the car and then on the settee before tea. A couple of quiet days now to let her recover and hopefully we will get another day out at the back of the week.

March 25th, 2016

My superhero with her Build-A-Bear now dressed as Wonder Woman.

March 26th, 2016

Easter weekend and a very excited girl for tomorrow! Lots and lots of easter eggs for Jessica to open tomorrow and for at least a week after too.

We are having a nice chilled out day, movies and snuggles for the majority of it. Jessica got herself dressed as Frozen's Queen Elsa this morning and so our first movie had to be Frozen!

Jessica is seemingly doing fantastic off this new treatment and as yet we have seen very few of the possible side effects. We have even managed to get out a few times this week, Blackpool zoo and Trafford Centre being the main days out. Previously during and after treatment we have been very limited to what we have been able to do but thankfully at the moment we have been able to make use of the days together.

Back to hospital on Tuesday for an audiology test and for chemotherapy, Bevacizumab. We are interested as to the results of the audiology test as a few of the drugs used can affect hearing and there are times we think that Jessica has suffered from this however it could just be selective hearing so often found in four year olds.

Pictures have become so important to us and often my camera is now glued to my side for any opportunity to capture a moment. I have fallen in love with this picture, despite her looking so old on it, this is Jessica to a tee, happy, cheeky and full of laughter.

March 27th, 2016

Starting young! Now my camera is always close to hand Jessica has taken a liking to taking her own pictures. I was trying out some new ideas today but had to give up and give into her to let her take her own pictures. She has already decided she wants to go out with me up to the forest to take pictures of creatures and waterfalls. I have now had to dig out an old compact for her to use when we go out so that she can have her own camera to use. I think one day soon me and Jessica might need a little adventure where she can take her own pictures to put on here.

March 30th, 2016

Well Jessica returned to hospital yesterday for chemotherapy and a hearing test. Our routine now is to visit hospital once every fortnight on a Tuesday to be administered Bevacizumab and on every second visit to be given Temozolomide to take home and administer for five days.

The results of the hearing test show that Jessica has lost some hearing in the higher range, particularly in her right ear. A chat with her oncologist has shown that this was expected with some of the drugs used in her previous chemotherapy courses but her new course should not worsen this. She still has a large range of usable hearing but she will be monitored to measure if there is any further loss.

She was given the all clear to go ahead with chemotherapy yesterday and her oncologist was delighted with her well being and lack of apparent side effects to the latest course of chemotherapy.

We have also been given a date for Jessica's next scans, the first set since starting this new trial. Wednesday 4th May we will start the full set of scans and tests to see if the cancer is responding to treatment.

April 5th, 2016

A massive thank you to Lancashire Police, in particular Hutton Police Headquarters Mounted Unit and Dog Unit, for inviting Jessica to go to meet the horses and dogs.

Jessica had a brilliant morning starting with being picked up from home in a police car and being chauffer driven to the headquarters. Her first stop was the mounted unit where she had a great time in the stables feeding carrots to the different horses and had no fear of stroking each and every one. The mounted unit even tacked up one of the horses so that Jessica could have a ride around the indoor arena before training started. She was even able to watch one of the training sessions and took great delight in trying to spook the horses to scare them as per the instructors request. After feeding more horses and having a look around the transport buses we then went to visit the dog unit.

Jessica saw a few of the dogs, some of them especially fierce and scary, before then being introduced to two of the now retired police dogs, a springer spaniel called Crackers and a german shepherd named Baz. Jessica then got to see both these dogs in action, hiding Crackers favourite tennis ball for him to find and then watching Baz tackle the obstacle course.

Once again thank you to all those involved in giving Jessica a fantastic morning. She came home absolutely exhausted and ready for a rest.

Thank you so much to Heartfelt and Cherished Photography who invited Jessica and James along for a photoshoot yesterday. This is a sneak preview and I cannot wait to see the rest.

April 5th, 2016

I think today has really wiped Jessica out.

April 7th, 2016

Hey guys this is my God daughter Jessica she is 4 years old and is suffering from cancer I would like to fundraise myself for her buy donating all money's from the glasses I make for 1month but if anyone would like to donate u can click the just giving page below all orders to inbox please xxx

Jessica heard a knock on the door and upon answering it was greeted by Queen Elsa who had come to pay her a visit. Queen Elsa did Jessica's make-up and gave her magical powers that will last until midnight tonight. Once make-up was done they both sung songs together before having lessons on how to courtesy and twirl her princess dress.

Jessica was thrilled with her visitor and she already had her Queen Elsa dress on and was actually watching frozen when Queen Elsa arrived.

Click the photo for link to Facebook video of Jessica singing with Queen Elsa.

This is her story and also that of her family.Jessica was diagnosed, in September 2015, with stage 4 Neuroblastoma, a predominantly childhood cancer of the nervous system. It has so far been a long, arduous six month for the family. In February of this year the family were shocked even further to discover that the treatment is not working as it should and Jessica was removed from the clinical trial that she was on.

She is now undergoing a different clinical trial but we have been told by Jessica's oncologist that we are most likely now looking at prolonging of life rather than curing and surviving.

Family and friends are raising money to give Jessica the trips and treats that they think Jessica is deserving of. She has shown such fight and spirit through all this treatment and constantly has a smile on her face. The family want to see and create this smile and happiness repeatedly and these trips and treats will go some way to help with this and to create much needed happy memories for all of the family.Jessica we hope you had a fantastic day at Lancashire Mounted Branch and we hope to see you again very soon.

April 11th, 2016

A MASSIVE THANK YOU to Eyebrow Envy for inviting mummy and Jessica to have a pamper day. Had such a lovely day and met some amazing people. Jessica absolutely loved it and has been asking me to do it all over again.

April 13th, 2016

Daddy has gone back to work today. So as mummy can't take both Jessica and James out because she can't push 2 prams we are making to most of it with her friends visiting her. So she had a surprise visit off her best friend Orla and she had absolutely love it, playing dressing up and dancing to the film frozen.

April 14th, 2016

I have the pleasure of being in the presence of another beautiful princess today.My girl just loves dressing up.

April 16th, 2016

Thinking months ahead is extremely hard for us, knowing how quickly things can change, knowing how vulnerable Jessica can be. We of course want Jessica to lead as normal a life as possible despite all of this and one further step to normality is the process of her starting primary school in September. Thankfully early this morning we received the news that Jessica has got her first choice alongside one of her best friends.

Police from across Lancashire are taking to the ring to help raise vital funds for a four year old girl who suffers with a rare and aggressive cancer.

I am privileged to have the chance to fundraise for a cause which is extremely close to my heart. I am also very thankful to friends, family and colleagues who have got involved to try and make a real difference for Jessica and her family........... PCSO Tom Archer

Click the photo (above) for link to ITV page

Trolley Dash - April 23rd, 2016

A busy weekend ahead for Jessica and some of those doing fundraising for her.

This morning Jessica is at a trolley dash at a new toy store in Blackburn, The Entertainer, where she has one minute to run around and choose what she wants. A massive thank you to The Mall Blackburn for getting in touch with us to make this possible and a huge thank you to The Entertainer for inviting Jessica to take part.

This evening we are off to Salmesbury to watch the combined uniform services slug it out in a charity boxing event in honour of Jessica. I can not thank all those involved for the effort and hard work that all have put in, both in fundraising and also in the intense training to ready themselves for the fight. We can not wait to be a part of it and we are really looking forward to attending.

Tomorrow will be a relaxing day for us, time for Jessica to recover from todays events. We will however be watching the London Marathon in hope of perhaps catching a glimpse of Simon Woods who is running the marathon, raising money for Jessica. Good luck Simon and a huge thank you.

I hope everyone has a good weekend!

A massive thank you to The Entertainer Blackburn and The Mall Blackburn for inviting Jessica to take part in a trolley dash on the stores opening. Jessica had an amazing time and is now playing with lots of new toys!

Click these pictures for links to videos.

Playing with little brother

Playing with dad

Pop up Princesses.

April 24th, 2016

Pictures to follow later on but for now I would like to thank every single person involved in last night's Combined Uniformed Services Boxing event last night.

The night was amazing and thoroughly enjoyed by all. Despite such a long day, Jessica made it through more than half the fights before being too tired to continue. She was picked up by her granddad and taken home whilst we stayed to watch the rest of the events. She really enjoyed herself and loved watching the fights and all the attention.

Thank you to all those that stepped into the ring for Jessica, to all those who bought tickets and raffle tickets, to those involved in the preparation. Thank you to Heatseaker promotions and Fit2xl gym for all you have done. Your effort and contribution has been overwhelming and it was an extremely emotional night for us. We were humbled by last night and by the comments and attention Jessica received.

Once again, as I can not express it enough, thank you.

April 25th

Well as we said yesterday we had a fantastic night at the Combined Uniform Services Boxing Night, all done for the benefit of Jessica.

Again we cannot thank all involved for the huge success that it was and how enjoyable the night was, especially for Jessica.

Here are some photos I took on the night.

Boxing match pictures

April 25th, 2016

Jessica drawing the tickets for the raffle.

April 27th, 2016

The bond these two have it absolutely adorable. Little videos like this just melts our heart. Little brother giving his big sister lots of kisses

Amazing Sunday morning! Jessica has been maintaining her weight from food alone without additional supplementation, gaining weight in fact as she eats us out of house and home.

This last couple of days she has also been taking her medication orally, not relying on her NG tube at all. This morning Jessica was extremely excited as we told her that if she wanted, I could remove her tube. She was extremely brave as I removed it and is delighted to no longer have it!

Finally getting my princess back!!!xx

May 4th, 2016

Back to hospital this week for a full set of scans, the first set since starting this new treatment two months ago. We met with Jessica's Oncologist last week who was delighted with her apparent and obvious well-being.

Jessica appears to be doing really well on this new treatment with no visible or obvious side effects barring from the tiredness. I only pray that we are not being lulled into a false sense of security and that Jessica can actually defy the doctors and the given prognosis.

It will take a couple of weeks but I am praying that the scans show what the external signs are hopefully indicating and that Jessica is somehow fighting back.

She does seem to be doing so well at the moment, her NG tube now removed, her hair coming back thick and fast, still no sign of pain and no need for pain relief.

Jessica will have a radioactive tracer injected into her today and that will travel throughout her body and stick to the cancer cells. Tomorrow and Friday, alongside other scans, Jessica will have an MIBG scan which will highlight those areas that the tracer has stuck to and show us exactly what impact this new treatment has made.

May 5th, 2016

Popped in for a treat on the way home from hospital. Jessica has been a superstar today, two scans, one MRI and one MIBG, both consisting of her laying absolutely motionless for 40 minutes each. The MIBG we know she can do for long periods without sedation but such a long MRI was a huge challenge as previously she would have been sedated for such a long duration. Back tomorrow for one final MIBG scan and then the weekend is ours!

May 10th, 2016

This morning I posted this picture on my personal page, stating that the time between these two pictures was only six weeks and how quickly things can change on this journey that we are on.

I was in good spirits today, me and Jessica singing away in the car on the way to hospital, being silly and pulling faces. A few hours ago I met with Jessica's oncologist to have her checked to start today's chemotherapy. Rather unexpectedly for me he had Jessica's results from last week's scans, I was not expecting the results for another few days.

Those high spirits soon began to fade as he informed me that the new treatment has not worked how I wanted it to. The tumours in Jessica have shown no visible change, no reduction in size that I had prayed for.

I had half expected this due to her prognosis and the knowledge we have about this disease but I had been praying so much that Jessica was defying medical knowledge. She has been doing so well with this new treatment and in a way it has further fuelled our hope that she will beat this but hearing that today was a blow.

Indeed the positive side to look at is that the tumour has not grown any more and the treatment is currently keeping it at its current size. At least she is having a quality of life that we could have only prayed for at the end of last year, at least she still suffers no pain barring for wobbly legs.

Tomorrow I may be more positive still but today, after the discussions I have had, I really am struggling to find much more positivity to offer.

All I know for now is that Jessica has a lot more fight to give, the strength that she is building daily will be used to fight this cancer.

May 22nd, 2016

Good morning everyone, we have been a little quiet this last week or so. Jessica is still doing well but this last few days we think the last few weeks have caught up with her and she has been very tired and has been having tired and wobbly legs.

Jessica has been taking herself up to bed mid-afternoon for a nap or a lie down with no prompting from ourselves, such is her tiredness at the moment. We were at one point on temperature watch as it was slowly creeping up but thankfully it did not reach critical point.

We will mention all of this to her oncologist on Tuesday when we return for chemotherapy but we do not think there is anything in it. As said she has had a busy few weeks and I think that all of the that has built up and she just needs this rest to recuperate.

We will most likely update progress on Tuesay now as we are having a very chilled few days, watching films, eating rubbish and enjoying snuggles.

May 23rd, 2016

This is so true!

When we initially arrived at ward 84 (oncology & haematology), at Royal Manchester Children's hospital, we arrived late on, with the ward lights dimmed and curtains drawn. We sat in trepidation, feeling alone and scared of the place we found ourselves.

Waking the following morning after a night of very little sleep, the light now pouring in, curtains opened, we then began to see children fighting horrendous battles against these awful cancers with nothing but a smile on their faces whilst filling the corridors with the sound of laughter. A place we were initially scared of now offering hope, a sense of unity, a feeling of family.

Watching children running up and down the corridors, infusion pumps being dragged along behind them, racing as other children fly around on ride on toys. Making friends with those that are going through the same challenges and understanding when those friends needed rest, not questioning their sickness or fatigue as they felt it too.

Jessica used to amaze us knowing what medicines she was due to have, coming out with names such as Ondansetron, Domperidone and Acyclovir, names a three/four year old should not know.

A children's oncology ward is a place no child or parent should have to see but for those that do it is a place of hope, of fight and of family.

Those people we have met and become friends with through ward 84 forever held close in our heart. They have been our strength and our councillors through this journey and they will never be forgotten.

May 31st, 2016

James just adores his big sister. The bond they have is just amazing.

June 8th, 2016

Jessica making her little brother giggle his little head off. I can't stop watching this without a massive smile on my face. Love my babies millions x

June 15th, 2016

Jessica's next scan dates have been confirmed today, we go in the week commencing 27th June for a full set of scans. This is the second set of full scans on this new treatment, the last showing no visible change to Jessica's tumours, let's see what these ones reveal.

June 17th, 2016

A busy few weeks has meant we have not been able to update the page frequently but finally I am able to look through some of the pictures we have taken over the last few weeks.

Jessica was surprised a couple of weeks ago by another visit from the Pop Up Princesses, this time Queen Elsa arriving with a friend, Belle. Jessica was once again in awe, enjoying singing with the princesses and having make-up done before the obligatory magic sparkle from Queen Elsa.

A massive thank you to these special ladies, you made Jessica's day and she loved her make-up.

June 17th, 2016

Some more pictures from the last few weeks.

Jessica's Auntie Debbie and cousins, Jennifer and Emily, travelled up to see us for a few days. Jessica loved the visit and had a great time at Rhyddings park playing with her cousins.

As you can see from these pictures Jessica's hair is really coming back thick and fast now. She is again gaining weight after a slight blip recently, the threat of a nose tube once again making Jessica push to gain weight. The down side to this weight gain is Jessica's strength not increasing at the same rate and she has had a lot of problems with her legs recently. She now has a referral for physiotherapy, the first appointment this coming Tuesday, to try and get her some much needed strength back as all too often of late, activities like those shown pictured leave Jessica immobile for the remainder of the day, sometimes several days. Hopefully she will soon have some exercises aimed at improving these weaknesses to give her back even more normallity.

June 18th, 2016

Would like to say Congratulations to Lisa (the middle one) for completing the Pretty Muddy Challenge to help raise money for Jessica. I will put her just giving page in the comments so if you want to donate you can.

June 18th, 2016

One of my favourite "old", if you can call it old, pictures of Jessica, just two years and two months old here. She was so cheeky on the day, not wanting to stay still for any pictures and giving my best friend a real headache trying to capture her. This picture is the standout image on the day for me though.

June 27th, 2016

Well Jessica decided to come to the gym this morning. She absolutely loves the fact that she can exercise with me. Copying everything I do, going on the treadmill, squats, lunges (well what she is able to do) Thank you to Sy at the Fitness Bank for letting her come down with me again. I'm sure it won't be the last time.

June 28th,2016

Scan week this week, it soon seems to creep up on us.

As you can see from Jessica's recent pictures, outwardly she is doing extremely well, attending the gym with mummy and going from strength to strength. The wobbly legs we were originally concerned about have been checked by doctors and physiotherapists and they are of the belief that it is caused by a curvature in her right foot that is different to the left, this something that should be fixed with the right exercises.

These scans are always a time of anxiety for me and Nicki, seeing her do so well is something we have now become accustomed to but these scans always seem to have a way of bringing us back to reality. Indeed this very weekend we were once again brought back to the reality of this journey, a simple eye infection that most children would overcome with a trip to a pharmacist or GP, instead a trip to A&E for a full check up and a several hour appointment to be given what most children would be given after a two minute appointment. Of course it is always better to be safe but events like this give us a reality check on where we stand in life.

The results of these scans we will not know until at least a week Monday and as usual we will update this page when we have these results.

July 1st, 2016

This is a picture of Jessica today after her scans. To me this is a picture of health, happiness and fighting spirit, doing well in her battle against this awful disease.

This evening however my world was once again rocked to the core, a phone call from Jessica's oncologist...

Jessica is now no longer responding to this, her second clinical trial, and now for the first time in nine months of treatment, her tumours have now shown signs of growth. This was such a shock to hear, again the results not expected so soon and this time definitely not what we were expecting. We were fully expectant to hear that the scans at least showed a stable and none growing tumour, the same results as the last scan, however we were no where near prepared to hear that it was once again growing.

I feel physically sick as I write this, my head throbbing, Jessica now in bed, laughing and playing before bed as if nothing was wrong with her.

I can not put this picture of Jessica alongside the news we have just had, they just do not match!!! She is doing so well, going from strength to strength, gaining weight and growing her beautiful hair back so quickly. Sadly for us however is that her outward appearance is a false sense of security, a smoke screen of what hides beneath. Her primary tumour in her abdomen and one of the secondary sites, her right shoulder, have began to show the signs of growth we were praying against.

Jessica has now been removed from her latest clinical trial, four months into the six month trial we are now once more looking at alternative treatments. Her oncologist has this evening informed us of a colleague of his based in London, an apparent expert in this field, who may be able to offer another treatment to target this cancer. The paperwork and all the motions seem to be in place to make this happen but we are having a meeting in just over a week to confirm this. In the mean time, as one hundred miles per hour it may seem, we are re-starting fund raising for Jessica. We are eternally grateful of past fund raising efforts in honour of Jessica to give her treats and much needed days out. We now need to try and raise funds to allow us to cover living and travel costs for future treatment, especially with the likelihood of treatment in London. I will most likely need to take time from work once again, unpaid with little help from the government to cover our costs. I would rather not have to ask this massive favour of you all, you have all been amazing for Jessica up to now in numerous ways and we are forever in your debt. We are now running out of treatment options for our beautiful princess but I will do anything to try and keep that smile on her face for as long as I possibly can.

Thank you to everyone who has donated. It really does mean the world to us as a family. Thank you from the bottom of our heart.

I forgot to include and would like to add that the treatment would be provided by the NHS and this is not a bid to raise money for treatment. This is purely to help us with living costs and keeping this beautiful smile on her face as long as I can. My head is all over right now and I can not think straight xx

July 2nd, 2016

I just want to say a massive thank you to everyone for your messages of support, kind words and donations. We are overwhelmed by the amount of messages we have received and as yet have not replied to all due to the sheer amount. We are also overwhelmed and humbled by the fundraising efforts in such a short space of time, not just via the Just Giving page but also in messages received to organise events in Jessica's name.

Yesterday was an extremely emotional day that has left us sleep deprived and exhausted today. It was 4am before I finally got some much needed sleep and I was the awoke by Jessica at 7am, creeping to my side of the bed to pinch my Terry's chocolate orange!!! The look on her face was priceless as I raised my head to ask her what she was doing. Of course I couldn't refuse her to have some, despite her cheek, and both me and Jessica cuddled up in bed eating chocolate orange before breakfast...naughty daddy!!! Cuddles like that I am learning to cherish more than ever. Fortunately for me Jessica has always been a daddy's girl and any morning that I am not at work she takes the opportunity to creep into my side of the bed for big snuggles.

Today is a much needed quiet family day, this week has been long with Jessica's scan appointments. Tonight though we have some close friends coming around to keep us company and a promise from them to take our minds off life for a few hours. I feel it is much needed and also feel lucky for having such a great support network of friends and family.

Once again thank you all so much for everything, it means so much to us as a family.

July 4th, 2016

This afternoon called out for some much needed fresh air and a bit of a head clear for me and Nicki. Jessica and James had great fun until Jessica's legs became tired and we had to head back home. She did fantastic though, walking a great distance before needing me to carry her home.

Worryingly for us as parents, Jessica has this last twenty-four hours started to develop pain in her tummy, something she has not had to deal with for around six months. I have contacted Royal Manchester Childrens Hospital as although we have pain relief already at home, I am desperate to find the root cause of this new found pain that has twice left Jessica in tears today and with a horrific headache. It all seems too coincidental with the latest scan results and therefore I am not prepared to wait for her next appointment and instead I am taking her in for a check-up tomorrow morning. It is not even like Jessica is aware of what is going on or of the latest results or what they even mean and so I know she in not playing on it. The pain has genuinely brought her to tears and it is heartbreaking to see and a reminder of times past before she was doing so well. Her eating has also gone backwards today, struggling to eat much at all but I am putting this down the pain she has been in. Hopefully the doctors will be able to put light to this latest revelation tomorrow and I am praying it is nothing too sinister.

Thankfully between the bouts of pain that we manage with the pain relief she is quite active and lively as this countryside walk showed us. Hopefully tomorrows hospital visit is a short one that will put our minds at ease and we can get home for some more fun.

Well today's headaches and tummy aches have turned into a temperature of 39.0 degrees. Me and Jessica set off too Royal Blackburn Hospital half an hour ago and she is just having observations and antibiotics. It means a minimum of forty-eight hours staying here now until blood cultures come back. This is her first over night stay since February!

July 5th, 2016

Jessica is feeling a little bit better today, although still having some headaches and tummy ache it is nowhere near as painful as yesterday's. Thankfully she has been sick several times in the last twelve hours, I say thankfully as this points more to a viral infection than yesterday's concern regarding her tumours growth.

It was a rather unsettled night especially by the time antibiotics were administered and the last of the doctors left us alone. Jessica has been catching up on this sleep today whilst I look on enviously. Between the little naps Jessica has been dancing around her isolation room and colouring pictures for the nurses.

If the blood cultures come back also pointing to a viral infection then Jessica may be allowed home at some point on Thursday. Her temperature has come down over night and has so far stayed down so this would also allow us home.

Getting that fighting spirit back this afternoon! She has been dancing away and punching daddy!!! Love to hear that laugh.

Click pic for video

At the beginning of this year depression was setting in and it took a lot to try and rise above to enable me to stay strong for Jessica. Not wanting to ever show weakness in front of Jessica I used to escape for an hour or two for a walk in the local countryside. One of my favourite spots to reflect was this waterfall above Jack House in the pine forest. Unbeknown to me, a picture I took whilst there one day was replicated by a very close family friend, her intention to present it to me. With recent results forthcoming, Heather informed me of this but now wants to auction this fantastic replication of my photo to help raise funds for Jessica. Please see the link attached to read her own words.

Comment from Heather:

This painting was inspired by a photograph taken by Andy (Jessica’s Daddy) whose family are close friends of ours. On this particular day, Andy felt he just needed to take himself off with his dog as company for some much needed time from the stress and heartache of Jessica’s illness. On reading Andy’s blog and seeing the photograph, I felt I wanted to paint it and, if it turned out okay, to give it to Andy as a gift. In his blog, Andy referred to the this particular local beauty spot as an escape and a time to reflect in the tranquillity of the countryside which hopefully would give him the strength to focus on the long unknown road ahead of treatment for Jessica who last October was diagnosed with stage 4 neuroblastoma.

I do not claim to be an artist in any way – I do this purely as a hobby (and a very recent one at that!). After many hours of painstakingly painting pebbles and trying to get the waterfall right, my work was done. All that remained was to frame it and hand it over. In the meantime however, I learned the latest news that Jessica’s next phase of treatment was to be in London – I liaised with Andy and we both agreed that to auction the painting was a great idea to raise more funds to support the family and gain some much needed expenses for travelling and accommodation.

I have named the painting ‘My Escape’ – Andy found peace and tranquillity in his surroundings and managed to regain some of his strength and resilience in order to continue his journey of being a loving Dad to Jessica and her little brother James and a supportive partner to Nicki. I am truly hoping that this small gesture will go some way to alleviating some of the financial stress for Andy and his family whilst they battle on with the hospital visits, travelling and time away from the family home.

I very much look forward to receive your bids which will also coincide with a coffee morning to be held on 9th July – all bidders will be kept informed of progress and the closing of bids will take place on Saturday evening.

Heather xx

This is the picture I took on that day that Heather has painted x

July 6th, 2016

Jessica is now home!!! A day earlier than she should be as blood cultures are not yet back but doctors are pretty confident that it was just a viral infection and due to her wellbeing are happy for her to go home. We will receive news of the blood cultures tomorrow but are doubtful of it showing anything at all now. Jessica has suffered no sickness since yesterday dinner time and no further temperatures.

Thankfully her headaches and tummy aches have now subsided and were most likely caused by the virus rather than the feared tumour related pain. Thank you to everyone for your kinds words and messages of support as well as offers of assistance. They are greatly appreciated by us as a family.

Getting home this afternoon showed us just how much Jessica had missed James and vice-versa, both of them running to one another to give kisses and cuddles and enjoying playing together again. Time now for a relaxing couple of days as we are all shattered from the events of the last few days.

July 9th, 2016

A fantastic morning for Jessica!

A few weeks ago Jessica was invited to join the Pop Up Princesses for their bi-annual promotional photo shoot. Today was the date booked and the poor weather was not going to get in the way of Jessica meeting them all for this fantastic opportunity. The photographer at the event is going to pass on any images taken within the next week or two for us to share with you. I did however manage to get a sneaky pic during todays visit.

Jessica absolutely loved it and it sure did tire here out, almost falling asleep on the way home and then having a nap after dinner. Thank you so much once again to the Pop Up Princesses for the invite, you have made a little girl very happy today!

July 12th, 2016

Really anxious and nervous about tomorrows meeting with Jessica's oncologist, so many questions to ask and I know there will be a lot of information to absorb.

Normally at meetings like this we would go on our own without Jessica as we need to absorb as much information as possible without distraction and of course we do not want to show any emotion directly in front of Jessica. Tomorrow however we need to take Jessica with us as she is suffering terribly with her right shoulder, a site of one of the main secondary tumours. She started in extreme pain on Saturday and we have had to constantly have her on pain relief, including fast acting morphine to try and manage this.

We are hopeful that she has just banged it somewhere and due to the metastatic disease causing weakness in the joint, possibly a small fracture. I say we are hopeful as this would be the lesser of the two evils as we know from her scans that this is one of the areas that has shown some growth. Jessica will have an xray tomorrow before our meeting with the oncologist so that he will be able to see the results and inform us of the cause and best solution for this new found pain.

We would like to say a massive thank you to Heather, a close family friend of ours who auctioned off her painting and held a coffee and cake day for Jessica on Saturday, so far the toatal raised from this is an amazing £581!!! We are overwhelmed and humbled by the support the event received.

We would also like to say thank you once again for the donations to Jessica's Just Giving page, there have been some very generous donations that will help us so much as a family, wherever this future treatment takes us.

Thank you also to those that have contacted us either via this page or on our personal profiles to arrange fundraising for Jessica. All your efforts are very much appreciated.

July 14th, 2016

We went to see Jessica's oncologist yesterday and we now have a plan regarding the next stage of treatment. There is however a lot of information and as such we will update you later on regarding the next step.

Rather shockingly for us is how quickly Jessica has deteriorated this last seventy-two hours. She is in excruciating pain with her tummy and shoulder to the point she is now on slow releasing morphine twice daily with fast acting morphine as a top up when required alongside regular paracetemol. She has basically stopped eating and will only eat some small amounts of certain foods. All she has done so far today is lay down in my armchair and watch her tablet, the slightest movement causing her great discomfort. We have also been on temperature watch this morning due to some high temperatures but thankfully these have dropped again.

It is heartbreaking to witness and takes us back to last September when she was first diagnosed. I pray that she can start this much needed next treatment as soon as is possible as she needs it so much.

July 14th, 2016

This was not how I wanted today to end. Jessica has had to be blue lighted over to Royal Manchester Children's hospital in unbearable pain and now with a temperature of 39.5 degrees. The morphine we have been giving her has hardly touched her today and she has not once moved from the arm chair. It's breaking me to see her like this, I am praying RMCH can give her the comfort that she is desperate for.

Jessica is being admitted to undergo observations, pain relief management and any necessary scans. Her lymph nodes, especially around her pelvic region are very swollen and quite visible, causing her a lot of pain and discomfort. She will undergo an ultrasound of her abdomen tomorrow to see if there are any hidden issues such as other swollen lymph nodes.

The concern for us right now is the root cause of the pain and whether the primary tumour has shown significant growth since her scans two weeks ago. She is in the best place right now where her pain can be managed more effectively, via intravenous morphine if required, and also where they can monitor her for any signs of significant growth.

Thank you for all your messages, this really is a horrendous disease and we are thankful of all your support xxx

July 15th, 2016

Thankfully Jessica had a more settled night last night, only waking once for the toilet. Today however she has been very uncomfortable, finding and sticking to certain positions in bed to try and manage her pain. She has had an increase in morphine but due to regular top ups of fast acting morphine it looks like they may increase her dosage once again.

It's horrible to see her like this, feeling like we are back to September and first diagnosis. She has returned back to her daddy's girl ways, more often than not only allowing me to comfort her which is distressing for Nicki as she just wants to wrap her arms around her and make her feel better.

Jessica has had some xrays of her abdomen today to investigate the pain in her abdomen and what further action is required. We know the pain is disease related but are also looking into other causes such as possible infection that could be worsening it.

I will be going to Christie's at the beginning of next week, even possibly without Jessica if she is still unwell, to discuss the next stage of treatment. This next stage of treatment is very both very daunting and detailed and I wouldn't do it justice in this status so I will write a separate post later to keep you all up to date.

The aim at the moment is to make her comfortable and as pain free as possible until this next treatment takes place. We have both had numerous messages to our personal profiles and to this page alike. We will endeavour to read and respond where necessary when our heads are in a better place.

At the moment both myself and Nicki are struggling to come to terms with recent events and we are both in a dark place right now. We are staying strong for each other and we are both very appreciative of your support.

Jessica's next treatment - MIBG therapy

At the beginning of next week we will go and meet a specialist at Christie's. This meeting will be used to discuss the upcoming treatment in full detail as at the moment we still have some unknowns.

Here is roughly what we do kind of know and expect:

The treatment is radiotherapy via injection. We know that Jessica's tumours respond to the isotope used in the injection and the isotope is attracted to the cancerous cells and sticks to them. We know this as Jessica has had numerous injections of MIBG for scans. This injection is different however as the dose of radiation given to her is multiplied massively. Jessica's disease is so widespread that external targeted radiotherapy beams will not offer the same level of treatment that this internal treatment will hopefully achieve.

The radiation will be infused over the course of forty-five minutes to an hour. Jessica will have a catheter during her stay as the radiation is rid from the body via urine and the catheter is used so that the radiation in the urine does not sit in her bladder and cause any issues.

Once Jessica has the infusion she will be in isolation for between four and seven days as she will herself be radioactive and a danger to anyone who comes into contact with her. During this isolation period I will stay with Jessica in a lead lined room, myself separated from her via lead screens. I will be her main care-giver, and I will be given a radiation monitor that I must wear if I pass the lead screens, as well as apron and gloves etc. In the first twenty-four to forty-eight hours my contact will be strictly limited and monitored, I will need to sign a consent form to acknowledge the danger and risk I am taking by being near her as well as accepting responsibility for my own safety. I will only be allowed close contact for a few minutes every few hours and even then I will not be allowed much bodily contact, I will be allowed to wear gloves and hold her hand briefly but this will also have to be done from behind a lead screen to shield myself from as much radiation as is possible. This is going to be the hardest part for both me and Jessica, she loves daddy's cuddles and to not be able to have those will be heartbreaking. Once the radiation levels reduce my time with Jessica will be increased until she is at a safe level for full contact. Nicki will be unable to visit during this time of isolation as in being in contact with Jessica will preclude her from being able to look after James at home. Obviously this is going to be a hellish week for us as a family but is a necessary treatment to give Jessica the comfort she needs and quality of living in the time of life that it will hopefully buy her.

One of the biggest side effects of this treatment is the effect on her bone marrow and blood counts, fortunately we have already harvested Jessica's stem cells a few months ago and so if there is any irreparable damage we can dip into this backup to give her back what she needs.

We have numerous questions that we still need to ask and even some of the above may change slightly in the coming weeks but that is the basic outline of what is expected. Our meeting at the beginning of next week will give us those answers and hopefully we will then start the treatment with two weeks after that.

As an addition, our original plan to go to London has had to be changed with recent developments and our only realistic option in our given time frame is to go with the above treatment. The funds that have already been raised recently will be a massive help to us due to my now expected prolonged period of time from work due to this treatment.

MIBG Therapy

Metaiodobenzylguanidine (MIBG) is a compound that can be combined with radioactive iodine (I-131) to deliver targeted radiation therapy. I-131 MIBG can be used to treat high-risk neuroblastoma, a cancerous tumor that begins in nerve tissue of infants and very young children. MIBG therapy is generally more effective, less painful, and requires less time in the hospital than other treatment options.

Originally developed as a blood pressure medication, MIBG is a compound that is absorbed by certain types of nerve tissue, including neuroblastoma cells. For many years, it has been used diagnostically to determine where cancerous activity is occurring within the body.

More recently, oncologists began using it to deliver targeted radiation to neuroblastoma. I-131 MIBG is administered to a child through an intravenous line and absorbed by tumor cells, which are killed by radiation emitted by the radioactive I-131. This therapy destroys tumors while sparing normal, healthy tissue. MIBG therapy is currently used to treat relapsed or refractory neuroblastoma and is being studied as a treatment for newly diagnosed high-risk patients.

I-131 MIBG is well tolerated. The major side effect of therapy is low blood counts. A large study showed that 30-40 percent of children with relapsed neuroblastoma respond to MIBG therapy, which makes it one of the most active agents for relapsed disease. While it doesn’t cure neuroblastoma, I-131 MIBG allows patients to gain control of their disease and provide the possibility of prolonged disease stabilization.

July 16th, 2016

What a difference seven days can make! Saturday of last weekend Jessica was enjoying a photo shoot with the Pop Up Princesses, full of energy and running around. Even up until Wednesday, although struggling with pain, she was still active and her normal self.

She is still in some discomfort now but nowhere near the amount that she has been this last few days. Her morphine levels are now getting to a level to comfort her as a whole and any possible infection seems to be disappearing.

She has been up and about a little more today, only getting back in bed when her pain requires or when she needs to rest. The highlight of her day today has been meeting one of her favourite super heroes, Iron Man!!!

Jessica isn't home just yet, she recorded a temperature of 38 degrees over night and so she is being kept in until at least tomorrow. Her pain is a lot more manageable now on the higher doses of slow release morphine and she now only needs occasional fast acting morphine to keep her comfortable. She has however developed an expensive taste for Dominoes pizza and is preferring this much more than hospital food. I am not bothered though as it is great to see her actually eating again.

She was delighted this afternoon as I took over her little brother who she has not seen since Thursday. I also took her over a surprise of a LEGO Friends Horse and Vets truck and built that with her, three of her passions rolled into one, LEGO, horses and making better. When she does get home she has one more surprise, a LEGO Friends stable. Hopefully these will raise her spirits a little bit.

Hopefully she will be home tomorrow, her blood cultures are back showing no signs of infection. We just need to find out if we are at Christie's tomorrow and if so what time and where.

July 18th, 2016

Finally back home!!! A busy morning getting discharged from RMCH before going to Christie's to meet the Nuclear physicist, specialist and family care team. We now have all the answers we needed and her treatment has been pencilled in to start Wednesday 3rd August.

Jessica is worn out, falling asleep in the car on our way home. She has briefly played with her LEGO, the surprise bringing a beaming smile to her face. Now she is resting again, watching her tablet computer whilst curled up in my armchair.

July 18th, 2016

Jessica is a lot happier now that she is home and she can play with her LEGO properly, especially the latest additions!

She is still in some pain but we should be able to manage that here at home. We will be having a few days rest now as a minimum and hopefully that will also work wonders.

July 19th, 2016

MIBG therapy and what we now know.

Yesterday we met with the specialists and nuclear physicists involved in the next stage of Jessica's treatment. Most of the information we were provided with we did already know and we have already published on Jessica's page previously.

What we have now found out after a home risk assessment is that once Jessica is allowed home, after between four and seven days of hospitalisation, she will not be allowed any contact with her little brotherJames, in fact he can not even be within the same house. Therefore when me and Jessica do finally get home and out of isolation, Nicki and James will have to move out of the family home for around a week until her radiation levels are deemed safe.

Although she is allowed home I will still not be allowed prolonged physical contact so even when we are home there are to be no cuddles or snuggles whilst watching television. I fear this will hit Jessica most in a morning when she loves to come and sneak into our bedroom for morning cuddles.

I am praying that her pain is more manageable by then as at the moment when she is in pain she often loves tummy rubs to relieve her pain and cuddles on my knee to comfort her. It will be two weeks after her injection that we will be able to resume some sort of normality.

Although the treatment is quite daunting I can not wait to get it started to try and combat these growing tumours. I have no doubt that this will be the longest two weeks of our lives so far as we wait to actually commence the treatment, seeing her battle daily is a constant reminder of the uphill struggle she is continuing to face.

Today marks twelve months to the day that this hellish journey started. Here are my own words of that awful day..... WARNING ..... it's a long one!

Around this time, on this date, twelve months ago, I arrived at Royal Blackburn Hospital following what felt like the longest two hour journey north. Two hourspreviously I had received a phone call from Nicki, this was the start of this twelve month rollercoaster.....

At the time I was working away in Birmingham and me and my work mates had not long arrived back to our home from home. Dinner was being prepared and I was taking the time to relax on my bed whilst Brandon hogged my PS4 playing his way through GTA V. My phone rang and seeing the display I saw it was Nicki, being this time of evening I assumed she was most likely ringing me to allow me to say good night to Jessica as she did most nights. This phone call however was not the usual happy greeting followed by Jessica's tired voice, this phone call had a sound of worry in Nicki's voice from the off. Listening to Nicki recall a call she had herself received, listening intently as she broke down whilst mentioning the word cancer, my whole world began to implode.

How did we get to this phone call...

Jessica had been suffering from a sore and inflamed shoulder for a few weeks following a fall. She had already visited A&E who had no concern and said it was probably bruised or a tiny fracture but due to Jessica's uncooperative mood decided best not to X-ray her but see how she went on. The weekend of the 15th of July she also started with an eye infection which seemed to worsen as the weekend progressed and so I asked Nicki to pop her down to the walk-in centre whilst I returned back to Birmingham for the week and whilst there having her eye looked at, to ask again about Jessica's again inflamed shoulder. On checking her over and administering antibiotic eye drops a x-ray appointment was made for the Wednesday morning to check if there was indeed a fracture.

Nicki took Jessica to the appointment on the Wednesday and, due to it being a scheduled x-ray, was told to expect the results from her GP the following day. However the phone call from the GP did not come the next day, it came later the same day asking Nicki to go to hospital as a follow up was required. Nicki obviously did not hesitate to make her way over to Blackburn to find out what was up and what had been revealed but was in no way expecting the conversation that was about to unfold. On arrival Nicki and Jessica were taken to one side to run through the findings of the x-ray and without warning the doctor dropped the "C" word. The doctor had thought that Nicki had already been briefed and pre-warned via the phone call from the GP surgery but this was not the case and this was the first mention of the word cancer that Nicki had heard.

Back to the phone call...

Naturally Nicki was beside herself by the time she rang me, events unfolding a million miles an hour, I immediately hung up and after composing myself went downstairs to see my boss and informed him I had to get home. My mind was racing as I quickly packed my bags and left the house, taking one of the work vans to get me home, a 120 mile journey ahead. The journey seemed to last an eternity, in fact only two hours or so but feeling at least double. I was trying to piece together bits of information from Nicki and ringing my mum, Sharon, to try to inform her of events and to try and find comfort in her voice.

Finally arriving at Blackburn hospital and finding where they were I found comfort in Jessica's outward wellness and quickly sought the doctor to get the full findings. I was told that the radiographer who had reviewed Jessica's xrays had immediately spotted what he thought to be cancer and the Blackburn team were now liaising with specialists in Manchester and Birmingham to either prove or disprove these findings. My whole world was crumbling down around me as I stood there and hung onto every word she said.

Moving on...

In the next few days to a week we were informed that from the x-ray images that had been taken it was highly unlikely to be anything as sinister as cancer and that Jessica would be treated for Osteomyelitis, an infection of the bone, most likely caused by her previous fall. All of a sudden there was a sense of relief, a stay in hospital was required to administer intravenous antibiotics but she would be OK, nothing further to worry us.

Twelve months on we now know that this was not the case at all, ten weeks after this initial scare she would be diagnosed with high risk stage 4 neuroblastoma. It has been a hellish twelve months, a rollercoaster of a journey and we are still not at the end of this nightmare ride.

Thank you to everyone who has so far supported us through this journey, I am eternally grateful to have you as friends.

July 20th, 2016

This last three weeks seems to have been a downward spiral. Since the phone call regarding Jessica's latest results showing tumour growth we have had two periods of hospital stay, something Jessica had not previously had since February, now we are once again on temperature watch!!! We have not been home forty-eight hours since she was allowed home but here we are again monitoring temperatures and in fear that Jessica will once again be admitted if these do not stabilise soon!!!

Click above pic for link

Depending on how Jessica is this week we have two representatives from Cancer Research coming to pay Jessica a visit on Friday. If all is well they may be doing some filming as part of their Stand Up To Cancer campaign. I have been speaking to one of these representatives for a few weeks and so far all attempts at meeting have been thwarted by hospital stays etc. Me and Nicki will today be receiving a phone call from a psychologist from Channel 4 as part of their duty of care to make sure that we are OK emotionally for this film making.

We would love to be a part of this to try and raise awareness of what this awful disease means to families. I am not normally one to like being filmed etc, preferring to be on the other side of the camera but if our participation can help raise awareness as well as vital money for research then we will gladly take part.

I do not not know if and how any filming will be used but I do know they have a live entertainment night being aired on Channel 4 on 21st October. Here is to hoping that this night is a big success as so many families are affected by this awful illness and so much money is needed to research further treatments.

As we posted earlier we were on temperature watch, this has not changed much, most of the day Jessica being at a good temperature but occasionally spiking up but this seems to be at the times she is in most pain.

We had a visit from our Macmillan nurse at lunch time and she was also concerned with Jessica and her pain levels. As such we have now had to raise her slow release morphine once again. It is now at a level that she has not before had such is her pain at the moment. Alongside this increased level of morphine she is also on regular paracetemol and fast acting morphine.

It is heartbreaking to see her like this and she has slept much of the day, again eating very little. We are going to review how Jessica is on this new higher dose of morphine but we may also be making a trip to RMCH tomorrow or Friday to get her checked over.

Due to her not eating or eating very little me and Nicki are in discussions as to whether Jessica will once more need an NG tube so that we can feed her and at least take that worry away from her. An NG tube will also allow us to once again manage her regular medication even when she sleeps and without the need to wake her. It is something we really do not want her to need but with the way she currently is we may have no option and it could well be the best thing for her in her current situation.

July 21st, 2016

You would not believe the difference in Jessica today on her new higher dose of morphine. She is the polar opposite of where she was yesterday, spending large portions of today playing.

So far we have today had a making session where Jessica made one of her friends a Birthday present and just now both me and her have been playing with LEGO, mending poorly horses. It always amazes me at such a young age what comprehaension she has of all things medical. Jessica decided that one of the horses had broken its leg and after doing observations she decided that an xray was needed followed by a cast. All this from a girl that has never had a cast before ha ha.

It really is great to see her playing like this and we have both been putting on funny voices whilst playing with all her different LEGO figures.

We are going to go to RMCH (Royal Manchester Children's Hospital) tomorrow to see one of the dieticians and to have a NG tube put back in, Jessica deciding that this would also be for the best so that she can get the energy that needs.

I cannot begin to describe how much happiness these Princesses bring to Jessica. They all do such an amazing job and are all so talented!

A couple of weekends ago all the princesses of Pop Up Princesses pulled together to give these special litte girls a magical day!

We hand picked these children all for different reasons and felt they deserved a day of enchantment. Amongst these beautiful princesses, we have Jessica who is staying strong and battling a horrendous illness, we have Maisie who was supposed to visit Disney Land a few weeks ago and due to illness couldn't and we have Lucia, Thea and Eleanor whose mummies work so unbelievably hard that we felt they deserved this treat too. So Memory Boutique Photography, I Am Yasin Photography and us Prinnys got together to make some dreams come true.

Keep your eye on the page for more gorgeous snaps from this fantastic day

July 22nd

My beautiful princess has had an NG tube put in this morning. She was such a brave girl with only a few tears during its insertion. We can now begin to once again feed her through this tube whilst still encouraging her to eat when she feels up to it. The biggest barrier to her eating at the moment is the pain that she is getting, especially the pain in her stomach. We will now be able to administer pain relief again while she sleeps, this helping her by her not going for a long period without the pain relief if she is asleep when it is due.

We have once again upped the dosage of her slow release morphine as we are just ironing out any little niggles she is having and we have also increased the dosage of the quick release morphine that she is able to have.

All in all she is a lot brighter these last two days, only a few occurrences of really bad pain and these quickly managed. This has meant she is able to move around a lot easier and is now able to play more often than lie down.

July 29th, 2016

We just want to say a massive thank you to Andy & Katie of Burnley Police for taking time to come and visit Jessica this morning. As a team they have been raising money for Jessica by means of a swear box and all I can say is by the amount they have raised in two weeks, they are a potty mouthed lot ha ha.

They also brought Jessica her own uniform and handcuffs which she loves and she is now led on the settee dressed as a police officer whilst watching her tablet.

July 31st, 2016

Starting to get nervous about this coming Wednesday now. It has been 30 days since receiving the news that Jessic's tumours are now growing and it has been a hellish time. The pain and suffering she has had to deal with this last 30 days I would not wish on anyone, let lone a child with no comprehension of why she is suffering.

I have started to explain to Jessica what this treatment involves, the isolation and the magic medicine that makes her better meaning we cannot have cuddles as that same medicine can make me poorly. She does seem to understand a lot of it and is taking a lot of the conversations in her stride however only time will tell how she will actually deal with this.

It is going to be a busy couple of days getting together last bits for hospital and saying goodbye to loved ones that we will not see during this treatment.

August 1st, 2016

We have just received a phone call that comes as a massive blow to us. The nuclear medicine department of Christies has just rung us to inform us that the radioactive isotope to be used for Jessica's treatment this Wednesday has today failed its quality control check!

This radioactive isotope is made in Germany and now has to be re-made but means we cannot go ahead with treatment this week! Instead now we have to reschedule for a later date. The nuclear department is all set to start the treatment next Wednesday, 10th August, but we are now at the mercy of room availability as to whether this date can be set in stone.

As you can imagine it is a huge crushing blow to us, counting down the days to then have the treatment delayed. We have been watching daily as Jessica develops more and more symptoms of tumour growth, watching her suffer with pain, seeing more and more lymph nodes appear swollen beneath her skin. Yet again though all we can do is wait, tomorrow we should find out if the room is available for use next week. As we find out we will update you all.

August 3rd, 2016

Click the picture for link to video - This is the video from Jessica's visit to see the Pop Up Princesses a few weeks ago xx

August 4th, 2016

Finally the news we have been waiting for...Jessica WILL be going to Christie's next Wednesday, 10th August!

At last we can make the relevant plans and hopefully get rid of this pain that Jessica is in. Just to give you some sort of idea of the pain that Jessica has developed this last three weeks, she started on 5ml (10mg) of slow release morphine twice daily and 1.75ml (3.5mg) of fast release morphine as and when needed. Now, three weeks later, Jessica is on 30ml (60mg) of slow release morphine twice daily and up to 9ml (18mg) of fast release morphine as and when required. These are huge amounts for Jessica and even then we are still sometimes short of addressing her pain. This treatment should alleviate some of this pain straight from the off more or less and for that reason alone I cannot wait to get started.

Time to once again start attacking this awful disease!!!

August 9th, 2016

One more sleep! In less than twenty-four hours we will be at Christies to start Jessica's treatment. The wait has been unbearable with one cancellation thrown in to prolong our wait further, finally though we can resume our fight against this disease and hopefully bring Jessica some comfort.

I am really not looking forward to this coming week in hospital, the minimal contact, the separation from her via lead screens and the isolation. I am however looking forward to what we hope the end result will ultimately be, a pain free Jessica.

August 10th, 2016

Well this is my view of Jessica for the next four to seven days. We have been at The Christie all day and it has been a horrendously hard day for Jessica. Finally now all the commotion is over, her treatment has been done and is now finished and it is now just a waiting game whilst her radiation levels deplete. The "wooden" doors you see at the bottom of the image are actually lead and they are now my protection. There is an additional shield on wheels beside her bed that I can use when I administer her medicines and sort out her feeds. Barring for the medications and any urgent assistance for Jessica I am now to remain behind these shields to limit my exposure. Our room is now locked and can only be accessed via a key fob to keep everyone else safe. I will keep you updated throughout our stay although I am praying it is a short one.

Well Jessica has just been sick all over herself, her bed and the floor. Poor girl now has to lie there like that whilst special measures are put in place to clean up. Even her vomit is classed as radioactive waste and as such needs to be handled in the correct manner. Bed sheets will be removed and decontaminated, pyjamas will be disposed of and the floor cleaned in a quick turnaround to limit myself and the nursing teams exposure. Thankfully I can clean up Jessica myself whilst nurses tend to her bed, as long as I am gowned and gloved and of course carrying my obligatory Geiger counter.

I just want to give her a massive cuddle, wrap her in my arms and not let her go. Hearing her being sick and not being able to comfort her in anyway is heartbreaking. Thankfully we have been told that one episode of sickness can be expected four to six hours after the infusion and after this one episode, normally there are no further issues. Fingers crossed that this is the case.

August 11th, 2016

Click the pic for video link

This device shows how much radioactive contamination is on whatever is put near to the sensor. It differs from my personal counter in the way that my personal counter shows my overall exposure to a radioactive source and warns me when I am too close to the source. This device purely shows what level of contamination is present, for example on skin, clothing and shoes. The numbers you see at the beginning and the end of the video are the background radiation levels in the room and are perfectly normal. On presenting something to the sensor, on this occasion the skin on my wrist, the reading should not increase by more than ten units. If it raise more than ten units, which it was considerably more, I need to take immediate action to decontaminate or quarantine the affected area.

An example of this was the nurse last night cleaning Jessica's room after she was sick. Although he cleaned the floor thoroughly, by then standing in that area after the matter, he contaminated his shoes to the point that he needed to place them in quarantine and change in to a fresh pair. This is how potent this stuff is! The reading on my wrist is after administering medication to Jessica and even despite no direct bodily contact with her I have enough contamination to require decontamination of the area.

These procedures are now second nature to me but they are protocols I wish I did not have to know and I cannot wait to forget. I just want to get my little girl back home now!

The nuclear physicists have done a twenty-four hour radiation check and Jessica has so far lost just over half her radiation and so we are currently on course to come home on Monday if she carries on with those reduction levels.

I have myself in the first twenty-four hours reached the maximum safe level of radiation for a member of the public to be exposed to and so I have had to sign a consent form to allow me to further exposed to radiation. This now also means that when Jessica does come home I will have to take my geiger counter home for a week to monitor my exposure even once we are home.

Jessica is a lot more settled now, suffering from pain but we are managing that. We were told to expect things to get worse before they get better as the radiation can at first swell the tumours which will of course give her more pain. Hopefully though these swellings will not last too long and not cause her too much more discomfort.

August 12th, 2016

Click photo for link to The Lancashire Telegraph

Jessica is once again in the local paper, a few of the details have been worded incorrectly but in general it is correct.

Jessica has so far had a more settled day. We seem to have found and resolved what was causing her sickness and thankfully it is not treatment related.

Her pain does seem to have subsided somewhat this last twenty-four hours to the point where it is more often than not only two lymph nodes that are still giving her discomfort. The doctors and nurses both here and from RMCH have been amazing at tending to Jessica's needs.

We are looking at being discharged from The Christie on Monday but before we can go home we need to go to Royal Manchester Children's Hospital for a much needed blood transfusion. Her haemoglobin levels are below the minimum required level and this treatment will also affect them and worsen these already low levels.

Once we get to RMCH we will need to proceed directly to isolation to protect other children from her radiation and we will spend the day there before finally going home that evening. Both me and Jessica can not wait for this time at home and although we are still a long way from cuddles and some sense of normality, at least being home will bring comfort.

August 14th, 2016

There are some absolutely amazing doctors and nurses that work for the NHS. Whilst Jessica is at The Christie receiving this specialist therapy she needs a paediatric doctor to be here at all times to address any issues. Me and Jessica have just said goodbye to a doctor who has been here with us for thirty-six hours straight, her shift starting yesterday morning and only now just finishing! We have had other consultants including Jessica's oncologist coming in on their days off just to check in on us and make sure that Jessica is comfortable and doing well. I really do not know where we would be without the NHS sometimes.

August 15th, 2016

In this last twenty-four hours we are beginning to see improvements in Jessica, signs that the treatment is doing what it was hoped it would do. We have begun to incrementally decrease her slow release morphine and move away from the reliance of the fast acting morphine.

Jessica has begun to show signs of movement, herself wanting to get out of bed and walk to the toilet, something that a week ago she would not have contemplated. She has lost a lot of muscle mass this last few weeks to the point that she does struggle to carry her own weight but with support she is pain free enough to attempt these movements. She is also a lot more talkative once again, something that I had really missed about her this last few weeks, hearing her giggling and belly laughing is an enormous relief and has given me something to smile about.

Her radiation levels are too high for us to come home yet and we are having to spend another night here at The Christie in isolation. The days are getting harder now, tonight will be night six and has meant little to no interaction with a human face for the majority of that time. Perhaps what is harder is Jessica's increasing frustration with the lack of contact, on several occasions watching her sob as I have to refuse her cuddles. Also with her new found movement comes her want to play and make things, something that I would normally do with her but again I have to refuse, leaving her to entertain herself.

One concern for us is Jessica's haemoglobin levels, at a level of sixty-two (transfusion level is eighty) which is causing her to be extremely lethargic and short of energy to do much at all. We are trying to arrange a transfusion for her but The Christie cannot do it as they do not have a licence to give blood to under sixteens. We are trying to arrange going to Royal Manchester Children's Hospital tomorrow or Wednesday but there is a lot of preparation involved as Jessica needs to be in isolation away from any other children for their safety.

Hopefully tomorrow we will get the all clear to leave here and get the go ahead for this much needed blood transfusion.

August 16th, 2016

Look who is on her way home!!!

August 16th, 2016

Finally home and settled but not back to normality just yet! Jessica's little brother James has, before we got home, had to move out for a week. Her levels are low enough to be around adults as their cells are fully developed but she is still twenty times the safe level to be around children.

Jessica is classed as safe to come home and away from the lead lined isolation but we still can not have long cuddles, sitting on our knees etc. We still have to maintain our distance from her to protect ourselves from radiation. This is more so important for me as I was exposed to a lot of radiation this last week whilst at The Christie with her. I have had to bring my Geiger counter home with me to wear at all times as I am already more than double the level that the UK public are permitted to be exposed to and so need to monitor further exposure over this next week.

In a weeks time we will get some normality again, James and Nicki will be able to return home fully and we will once again be able to sit beside Jessica and we will be able to enjoy much needed cuddles.

August 23rd, 2016

Well mummy and her princess had a lovely walk up to the park today. First time she has been out in just over 2 weeks. She absolutely loved it and didn't want to come home. Glad to see her so happy and smiling xxx

September 12th, 2016

Well today our little princess will be starting her first day at school. She will only be doing a couple of hours a day in the afternoon to start with, then maybe in a few weeks she may be able to do the odd full day here and there. We are extremely nervous about this but Miss Jessica is very excited and just cannot wait to go and see her best friend Orla and meet some new friends. I really hope she enjoys it xxx

September 16th, 2016

Jessica is currently an inpatient at Royal Manchester Children's Hospital due to developing a high temperature yesterday afternoon. She was in fact already at hospital when she developed the temperature as she was visiting clinic for her routine appointment.

We knew before taking her that she would be needing a platelet transfusion due to numerous bruises and the development of a platelet rash. Upon getting her blood results back we found that she was in desperate need of platelets and also in need of blood as her haemoglobin was low. Just before receiving the six hours of transfusions Jessica spiked a high temperature and an hour later it hadn't gone down and so was transferred on to the ward. Jessica will now have to stay in hospital for a minimum of forty-eight hours from her last recorded high temperature which so far was last night.

Her neutrophil levels are extremely low now and she is now classed as neutropenic. We will now have to consider very carefully when Jessica can return to school as at the moment she is extremely susceptible to infections which will put her back in hospital and can also be very dangerous to her. It is a massive shame as she has loved the three afternoons that she has managed to attend school and she will be devastated to learn that she will have to miss out for a period of time but her health is our foremost concern.

Hopefully if her temperature stays down and her blood cultures come back clear we can get her back home late Saturday/Sunday. She is fine in herself, in fact hyper this morning, she has a private room and is bouncing off every wall which is a good sign.

September 16th, 2016

Well yesterday Jessica got to meet some Star Wars characters. As you can tell by her face she was really happy. After this picture was taken she was following them everywhere

September 16th, 2016

My gorgeous princess is doing really well today. Doctors have confirmed that barring for any further temperatures Jessica will be able to come home tomorrow afternoon.

She has been such a brave girl having to have two cannula's due to her Hickman line not bleeding back. Her oncologist is so happy with her progress that her routine appointments that used to be every fortnight have been changed to monthly!!

September 16th, 2016

Goodnight World. I'm having nice dreams, see you in the morning xxx

September 17th, 2016

YEY.... we're back home, we have a happy girl xxx

September 23rd, 2016

Today has marked a year to the day of Jessica's diagnosis. This is the status I put today on my personal profile marking this milestone...

Today is a date etched deep into my brain, a scar from a conversation with a doctor, a moment in time that will never leave me. This time last year we were oblivious to the darkness we were about to be thrust into, heading down for an MRI scan on Jessica to discover what was lurking inside of her. By dinner time today we had our answer, the conversation that to this day still seems so vivid yet so surreal, the face of the doctor as he entered Jessica’s room an image that stays with me like a haunting photograph.

Today marks the one year anniversary of Jessica’s diagnosis of stage four, high risk Neuroblastoma. It has been a hellish twelve months with seemingly more lows than highs, a constant battle of survival for Jessica and a battle of depression for myself. For the most part it has seemed that for each glimmer of hope we have been presented with, a dark vicious blow awaits not much further along the way.

There have been days, many of them, when I could not even be certain that I would wake up with my princess such was her suffering and ill health. There have been times where I have had to contemplate not just the what-ifs but also the when. There have been goodbye kisses where I have had to hold back tears not wanting Jessica to see me break down.

Childhood cancer is a vicious and unforgiving disease, parents forced to watch in anguish as their own flesh and blood suffers more than words can describe, those same parents, like myself, who have had to physically restrain their child as medical practitioners perform procedures that a child does not understand. I cannot count the amount of times I myself have had to restrain Jessica as she screams in fear and cries in pain as a doctor or nurse presents another needle, a nasogastric tube or a catheter.

Through all of this Jessica has been a fighter, her strength and her smile keeping me going. She is still oblivious to her diagnosis, too young to understand. She is however still insistent that she will get better, constantly making plans for the day that she is better. It is amazing to see her joyful spirit, her playful nature with her little brother and to witness her enjoying life. Even as little as two months ago I would have not been able to foresee this spirit that she shows today such was the level of her tumour growth and unrelenting pain.

Each day I pray to wake up to news of a new miracle cure, a chance that this disease will not win its fight. I keep a sense of hope with an air of reality, a reality that one day I may wake and Jessica may not. It is this sense of reality that keeps me treating each day with the respect it deserves, a muted hope that something will change for the better but without building myself a sugar pedestal to be washed away should the unimaginable happen.

Jessica is at the moment doing well, her strength and weight increasing, her laughter louder and more prolonged each day. I know though how quickly this can change, how rapidly this disease can change the odds. I have witnessed first hand this onset and seen others lose this fight quicker than I care to detail.

The one thing that will get me through today is that through all of this, Jessica is still here, still fighting, still sneaking into bed beside me for a morning cuddle, still making me smile with her witty comments. Today I can still hold her hand, tell her how much I love her and listen to her affectionate reply. The kisses and the cuddles I cherish for I know that I am lucky to still have these much loved moments and hang onto them at every opportunity.

My prayer for today is that on this date next year I can still have and savour these moments but for now I live day to day and week by week not taking this fragile life for granted.

October 5th, 2016

I was hoping to never have to write the following update but today we as a family have been rocked by the latest revelations of Jessica's fight against this pig of a disease.

Today we visited Royal Manchester Children’s Hospital for a routine CT scan and for a blood transfusion to correct her haemoglobin levels. Whilst at the hospital we met with Jessica’s oncologist due to some pain that she has been in this last week. Dr.Penn has given Jessica a thorough physical examination and found that although her existing tumours appear to be of a similar size to previous examinations he believes that the new pain, in new areas of her body, is the progression of this cancer. This is also based on some recent test samples that have come back showing her levels raised in areas that also indicate this progression.

We knew something was wrong straight after his examination as he asked for a nurse to take Jessica away to play whilst he spoke to us. The following conversation has left us heartbroken and in pieces. Despite her appearing to do so well after the recent radiation treatment it looks like the cancer has started to spread further. We are now left with very few options as to where we now go on this hellish journey.

In short there are little to no treatment options remaining, those treatments that do remain are only in the very early experimentation stages and will most likely offer no further benefit to Jessica. They are very intensive treatments that will most likely offer no gain but would make Jessica very poorly whilst ongoing. Our other option is to stop treatment and manage Jessica’s symptoms as they worsen and progress but to do so from the home environment where we can offer as much normality and comfort as is possible. A stop to treatment would also allow us to remove Jessica’s Hickman line from her chest and allow us more freedom to go and make the most of what time we have remaining.

We know that each child and each cancer is different but we have asked Dr.Penn what is the likely timeframe we have to work with and he has told us that in his experience we are now looking at a lifespan span more based on months rather than anything more. This has come as a massive shock to us as although we knew this day could and most likely would come around we certainly did not expect it so soon, especially not with her recent wellbeing.

As you can imagine both myself and Nicki are in a place of hell right now, a huge decision to make, one I wish no parent to have to make. We want to do what is best for our precious princess and we will return to Manchester next Wednesday to give our decision to Dr.Penn.

I would like to take this opportunity for all those recently been involved in raising money for Jessica and to all those who are continuing to raise money for her. This money will now be used to try and make the most of what time we have left with our special girl, to give her the enjoyment she needs and deserves and to offer her the care that she needs.

We have a lot to carefully consider this week and I offer our apologies now if we are slow to reply to anyone on this page over the coming days and weeks. We will keep everyone updated of any developments as and when on here.

Please keep Jessica in your thoughts and prayers.

October 6th, 2016

We decided to escape away today, to try and contemplate what lies ahead. Me and Nicki have talked long and hard about the decisions we have to make and spent hours on the sea front watching the world go by. Jessica is extremely tired and having a rest but we are hoping to stay long enough this evening to see the illuminations.

THE parents of a brave girl battling an aggressive and rare form of cancer have been given the devastating news that she has months to live.

LANCASHIRETELEGRAPH.CO.UK

8th October 2016

Jessica's Big Party --- Sunday, 30th October, Accrington

October 9th, 2016

Jessica has this last couple of days told us constantly how much she enjoyed her time at the beach. I think there may need to be a few more trips there in the coming weeks.

October 10th, 2016

This last thirteen months we have become accustomed to seeing Jessica’s limbs thin from a combination of muscle wastage and at times a lack of eating. Tonight however I was shocked to see her naked form, fresh from a bath the usual frailties all too apparent but now also something more.

The tumours from before still apparently dormant but the progression starting to show all too obviously. Jessica’s right arm has now got the tell tale signs of this progression, the dark mass lurking below causing visible swelling.

It came as a huge and upsetting shock to see this visible progression, something that even as little as a few days ago we could not see. I am not ashamed to say I had to walk out of the bathroom so as not falter in front of Jessica.

Nothing can prepare me for what lies ahead but what scares me more is the pain and the suffering that Jessica will suffer at the hands of this cancer before her body can take no more. As her daddy, as her guardian this is what is scares me more than anything. She was born into my protection, a protection I have failed to be able to offer this last thirteen months. I feel a sense of failing despite knowing there is nothing I nor anybody else could do to offer anything differently.

Tonight was a real shock, I felt my stomach churn as she turned to me and I saw the visible lump surrounding her tricep. Her heartwarming smile a stark contrast to what I saw further down and sending me over the edge. I know I need to show her strength, she is a daddy’s girl and when I am strong so is she but at times this strength is beginning to crumble.

October 11th, 2016

We have come to the hardest decision we have ever had to make.

Tomorrow in our meeting with Jessica's oncologist we will be confirming our decision to stop treatment for Jessica. It has been by no means an easy decision to come to but our conclusion has come from what is best for Jessica.

We want to be able spend quality time with Jessica, away from the clinical confines of a hospital bed, making the most of whatever time we have in the comfort of our family home. We will of course be supported by Royal Manchester Children's Hospital alongside the care of Derian House hospice.

This morning we have had a visit from our Macmillan nurse to discuss this ongoing support and what the future will hold. Once again Macmillan have been brilliant in discussing what we can expect on this journey.

It was a highly emotional morning as our talks focused on end of life care, a phrase I have previously been scared of but one that I now find some comfort in. We feel a great relief from this conversation knowing that we have chosen the right path for Jessica.

As a family we request that talks of further possible treatments are not had with ourselves. We have tried all we can and explored every avenue to make a difference. We have had numerous messages asking if we have considered X, Y and Z and believe me we have looked long and hard at all the options available.

Sadly in this life sometimes nothing can be done and this is something we have had to come to terms with, however hard and upsetting it has been.

Our decision will allow Jessica to end her life with best possible dignity and comfort. The choice of further treatment was fraught with complications and ill-health due to treatment and with little gain. It will allow us time to give Jessica distraction from the pain and from the symptoms and to give her as much normality as possible.

We thank you for your continued support and for your comments and messages. They mean a lot to us and this page will serve a purpose to one day enable us to look back on these times and see the support that Jessica has.

October 12th, 2016

Well that's it, our decision confirmed with Jessica's oncologist. In a way by the end of the meeting I felt a huge sense of relief as a week of deliberations finally concluded.

It was again quite emotional as we spoke of what we as parents wish as the best for Jessica. We have decided to accept some targeted radiotherapy to help give Jessica some comfort from the symptoms and pain. This will be quite intensive beam therapy so that we do not keep having to return and can enjoy our time as much as possible. This will start soon as the tumour on her arm is quite swollen and this will be the first area to be given this targeted therapy. We have declined a low dose oral chemotherapy course as it is not guaranteed to give Jessica relief but will certainly cause hair loss, a distress that Jessica does not want.

The conversation then turned to "Do not resuscitate" forms which we have decided to give consent to be signed. Our view is that when her time does come we allow it without allowing any prolonging of suffering. There is also an option to withdraw consent of the use of antibiotics if she gets a fever. For now we have left this one unsigned as is her wellbeing at the moment that we are happy to treat fevers but in the future it is an option we have up our sleeves to allow what is best for Jessica.

It was a huge relief once everything was in place to hear Jessica's oncologist say that if he were in a similar position with his daughter, that he would like to think he would do the same as we have done. As much as we knew going in to the meeting that we were doing the right thing, to hear those that work with this daily offer the same thoughts also gave us comfort in our decision.

Something that has been close to our heart since this diagnosis has been awareness and part of that awareness is research. Before we have been asked we have offered donation of any skin tissue or organs that will help further medicine to treat this pig of a disease. If this donation can go some way to helping other children and families from suffering the way that our family has then at least there would be some positivity come from Jessica's passing.

Jessica's Hickman line (the line directly into her chest) is now scheduled to be removed. This the final stage in our decision to stop treatment and will give Jessica so much more freedom and comfort. Hopefully this is to be removed on Tuesday of next week, Jessica's oncologist wanting to get things done quickly for Jessica to allow as much normality as is possible.

Once again thank you for all of your messages, although we have not replied to many we are eternally grateful for your support.

October 14th, 2016

Princess Jessica is off to watch Disney's Frozen on Ice this afternoon!!! She is so excited to go and watch it and to have some quality one on one time with her grandma, grandad and auntie.

She has had a distressing morning as we had to have a nasogastric tube put back in as she is not eating anywhere near enough to sustain her and has a lack of energy due to this. It is in now though and soon forgotten about apart from her protecting it from anyone in case they catch it. The nasogastric tube was something we were all hoping to avoid, mainly because of its visual stigma, but is a necessity that cannot be avoided unfortunately.

This afternoon will more than compensate for this distress and she will love the show and possibly meeting the characters.

October 17th, 2016

Just arrived at The Christie for radiotherapy to try and alleviate Jessica's pain and give her comfort.

Her pain and her tumours are now so severe that to touch her right arm and right leg causes her excruciating pain and she has lost a lot of mobility, even struggling to stand at all now.

She is in good spirits this morning though, and is showing her cheekiness, her wit and her smile more than we have seen this last couple of days.

Hopefully this one intense session of radiotherapy will give her some comfort and allow her a bit more mobility.

October 17th, 2016

We have just seen Dr.Rao, the specialist at The Christie whom Jessica was under the other month for her MIBG therapy.

It was a bittersweet meeting as the last time he saw Jessica she was doing so well coming out of the treatment. He has looked through all of Jessica's scans and has informed us that although Jessica's tumour in her leg is causing her pain, it is not this that is causing her immobility. He has trawled through her scans and found a tumour on her right hip that is constricting blood vessels and nerves that go to the leg and it this causing her immobility. It has actually been revealed today in a physical examination that she has lost a lot of feeling in her right leg now. We knew her leg was getting worse as she physically moves her leg with her hands now but this lack of feeling came as a shock to us.

What was an even harder pill to swallow is the fact that radiation treatment she had in August has actually calcified (basically killed) her primary tumour and this is no longer active or causing issue other than being an unwanted mass. This was hard to hear as for so long this primary tumour was active and causing issue, to hear that it is now no longer active but instead it is now the secondary tumours causing all this carnage was hard to swallow.

Meetings like this really bring to the forefront how aggressive this cancer is and how quickly this can progress.

Jessica was a super brave girl yesterday on what turned out to be an extremely long day. We set off from home yesterday at 10am and did not get home until 7:30pm!!!

Normally The Christie would not plot and treat tumour sites on the same day due to the complexity in plotting the site from CT scans and transferring it into data for the radiation technicians to interpret. However due to Jessica having this done for comfort it had been agreed to do it in one day.

She was given two high dose sessions, one to her right arm and one to her right leg, targeting the bulk of the tumours in those areas to try and alleviate her pain. Whilst also being prepped for her arm and her leg her specialist also decided to plot for her pelvis and hips. The treatment for this area was not done yesterday due to side effects from multiple areas being targeted in one session but she is now marked and plotted ready for a session early next week to target the hips and pelvis. The hope of this session will be to try and give her back some feeling in her right leg and possibly some mobility.

Next weeks session will not be as long as it has already been plotted and planned. Marks have been made on her body that have to stay there until her next session so they can line up the radiotherapy machines exactly as plotted. Next weeks session will be her final radiation treatment, a decision made by myself and Nicki due to the distress it put Jessica through in her fragile state. We could keep targeting different areas but to what gain, certainly not a gain of life and so we would prefer to remove the distress and keep her comfortable at home using pain relief medications.

October 18th, 2016

We have a happy girl.. setting off to Manchester hospital to have her Hickman line out.

October 18th, 2016

Princess is still waiting to go for surgery to have her Hickman line removed. But for now she is curled up on the chair sleeping.

October 18th, 2016

Jessica is out of surgery now after successfully removing her line.

There was a bit of a complication when anaesthetising her. They used her line to administer the anaesthetic which is flushed weekly and has not had issue. This time however there was an issue and the pressure of the anaesthetic caused it to balloon up under her skin to quite a horrific size causing Jessica some serious discomfort. As soon as this happened the surgical team immediately administered her gas to send her to sleep and rushed her in to theatre to drain her neck and complete the line removal.

Nothing seems to go as planned at the moment and even the most routine of plans seem to throw up surprises. Thankfully Jessica is now recovering well and the surgical team are happy with her. We just now need to wait for a surgeon from plastics to come and take a look at her to make sure there is no serious damage to her skin tissue in her neck.

Looking at her now and how quickly her neck is losing it's redness and swelling I doubt there will be any problems and we should be discharged home soon.

October 18th, 2016

Home at last!!!

She has a lot of pain in her neck from the earlier complications with the anaesthetic but the plastic surgeons have reviewed her and don't think there will be any lasting tissue damage. The pain there should begin to ease this next few days.

It has been a very long couple of days for Jessica with various things going on at different hospitals but tomorrow is a rest day!!!

Jessica is nice and chilled out now, extra pillows to elevate her and give her comfort. Tonight is her last night in her bedroom. We have come to the decision to move her bed into our bedroom and to butt it up to ours side by side so that she can spend her nights beside us.

Her sleeping patterns are all over the place due to her needing to sleep so much through the day and she can get quite distressed when she wakes alone in the middle of the night. This way she can cuddle up to me as much as she likes and if there are any issues over night then we are right beside her.

Jessica can not wait for the move into our bedroom tomorrow and for the extra daddy snuggles that will come with it!

October 19th, 2016

This is what we are talking about when we talk about the swelling in Jessica's right arm.

This is the progression of one of her secondary tumours that used to only reside in her right shoulder but has now progressed massively down her arm.

Still even with all this she has a smile on her face

October 19th, 2016

Well Jessica is delighted to be stopping in mummy and daddy's bedroom now. She has made herself comfortable and she knows that in a while we will get in bed right beside her.

The smile on her face made all the work this morning to get her bed into our room worthwhile.

October 20th, 2016

Well Jessica had one of the best sleeps that she has had in a long long while. This was her at 11:30 this morning when I finally had to wake her up!!!Safe to say she found a lot of comfort sleeping in our room. I loved waking up this morning and seeing her beautiful face as I opened my eyes.

The following is a long status that is heartbreaking to all that know Jessica.

It has been a horrible time since Friday with Jessica’s symptoms seemingly worsening daily. As you know Jessica had radiotherapy last Monday and by all accounts it seemed to have been giving her the comfort she needed and seemed to give her a bit more mobility. It was all looking good up until Friday night when she started to suffer from excruciating pain.

This last few days has been a constant battle to try and keep her pain at bay and give her some respite. All the tricks up our sleeves to help her manage the pain quickly disappearing and leaving us feeling helpless to her. One of the problems is that Jessica’s slow release morphine can only be increased in increments and so has taken a few days to try and match the dosage to the pain she is feeling.

Today we have had Jessica’s Macmillan nurse come to have a look at Jessica as she is not due to see her oncologist until this Thursday. Andrea, the Macmillan nurse, was quite shocked to see her progression and her visible pain. The tumours in her arm and leg do not seem to have responded to the radiotherapy and are visibly growing, her tumours in her abdomen also seem to be growing at an alarming rate.

What she is concerned of is the cancer spreading into Jessica’s bone marrow which she thinks it could possibly already have done and if not it may not long before it does spread to there. Once the cancer is in the bone marrow we know that the decline and eventual passing will happen very quickly. We will know if this is the case from ongoing blood tests that Jessica will have weekly.

Although we have been trying to prepare ourself for the eventual day that Jessica does leave our world and although we were told her life could now be measured in months, the statement that Andrea then told us has sent shivers through me…

It is of her many years experience that in her opinion that Jessica will NOT make it to Christmas this year.

As you can imagine this has left me and Nicki in absolute pieces. Christmas is only a little under nine weeks away and to hear that she most likely won’t even make this is devastating. It was only just over two weeks ago that we found out her life could be measured in months, to now hear we could have only weeks left with her is unthinkable.

I honestly cannot believe I am writing this, holding back the tears as I contemplate a life without my princess and knowing that this time will come soon.

Jessica’s pain relief is currently being reviewed and it may be changed to something that will settle her more and give her more comfort. This I welcome with open arms as seeing her writhe in agony and being unable to help is a living nightmare. The only comfort I have to give is to rub the areas of pain to try and assist her and thankfully this does seem to give her some comfort some of the time.

I would like to once again thank people for their amazing ongoing donations to Jessica’s Go Fund Me page and to all other ongoing fundraising. As much as we have not been able to get out as much as we would like with her and as much as the priority for the money continues to go on comforting Jessica in whatever way necessary, we now have to have in our minds the cost of our final goodbyes to her in the coming future. As such, any remaining money left after the treats and after she passes away will go to these final goodbyes. As much as this is something none of us want to think about, it is something that is a reality that we have to plan for and something that today has been brought to the forefront of our minds.

From a heartbroken daddy, please pray for Jessica and keep her in your thoughts.

October 28th, 2016

This is an insight into our day yesterday, visiting RMCH with Jessica for the final time.

Yesterday was a highly emotional day as we visited Royal Manchester Children’s Hospital to visit Dr. Anthony Penn, Jessica’s Oncologist for this last thirteen months, for a routine clinic appointment to assess Jessica’s wellbeing.

As we set off in the car we knew that the day would not be a good one. Very early into the one hour journey to the hospital Jessica began to feel very uncomfortable in her car seat, her seatbelt now pushing against her swelling abdominal tumours. It was a relief to finally arrive and get her out of the car and settled into her buggy away from the constriction of the seat belt.

Upon arrival and whilst sat in the oncology waiting room I could not help but look on in jealousy of families whose children are currently doing so well in their fights against other variations of this disease. I would do absolutely anything to be in their position right now and although I know the fight is far from over for these others they still have an element of hope I wish I could still have. It was hard sitting in the waiting room and speaking to some of the friends we have made, parents of other children living this hell, and seeing them holding back the tears on hearing the prognosis of Jessica.

Finally after what seemed like an eternity of waiting we were called in to see Anthony. By this point Jessica had settled and was fast asleep in her buggy as I wheeled her into his office. Anthony was visibly shocked at the image of Jessica that now sat in front of him and commented how only two weeks ago she had walked out of his office after his examination. This was a stark contrast to the girl we presented him with today, now sat slumped in her buggy, her breathing laboured. On previous examinations Jessica would fall into an uncontrollable fit of laugher due to his ticklish fingers, this time however the only sound to be heard was a whimper of pain as he lifted her top to examine her.

I have a lot of time for Dr. Penn, he has been amazing throughout this journey, highly supportive and informative whilst being honestly blunt when and where needed. After examining her he asked us if we still wanted to go ahead with our desired organ/tissue donation to medical research. Our answer still remains a yes. If we can help in anyway to prevent other families from going through what we have been through then that would be of some comfort to us. I signed the consent forms for a post mortem to allow this research and I asked how this will be carried out. Anthony has never been in this position before and so has some questions of his own before answering us fully but it is of his belief that Jessica will have to return to RMCH for the post mortem after her passing. Her body will then be returned to us to our desired location to allow our mourning before our final goodbyes.

Dr. Penn then moved the conversation onto what we needed to know about drugs that will be provided to us at home to give her comfort. These will now include pain relief that can be injected in to her and also a form of sedative that will work instantaneously to settle her whilst we await medical help.

The final part of the conversation was about what amount of time he thinks we now have with Jessica. It is of his opinion that with the progression that we have now seen that Jessica has no more than A FEW WEEKS LEFT TO LIVE!!!

This news felt like my heart was ripped out of my chest while someone sucked the air from my lungs. It feels like at every examination her life expectancy is reduced more and more. Two weeks ago we were told her life expectancy could now be measured in months, at the beginning of the week we were told that Jessica would most likely not make it to Christmas which is only eight weeks away, now yesterday this has now changed once again to an estimate of us only having a few weeks left with her.

I felt numb as we said our goodbyes to Anthony. It was actually the last time he will see Jessica as he agrees that the journey is now to far for Jessica to manage and he wants us to spend as much time at home as is possible. As we walked along the corridor to the exit I could not help but notice the end of treatment bell hanging from the corridor wall and I felt a pang of sadness. The bell is rung by all those that have finished treatment and is something that all parents and children look forward to when on this journey. It is a moment I have dreamed of and I have watched on in envy as others have rung it with a massive smile across their faces. Today I walked past it knowing that although Jessica’s treatment has ended it is not with the celebration that those who have rung it previously have had.

As I have said in the above, Jessica now most likely only has a few weeks left to live. We are extremely grateful to all of you for your support, your friendship, your donations and your prayers. We know that a lot of people on here know Jessica personally but we ask that if you would like to see her, if possible you attend her party this coming Sunday. We are now going to give Jessica a couple of days rest to ready her for her big day this weekend. I hope that many of you can come and enjoy the day with us, the details of which are on an event on this page.

After the party this Sunday we will ask that myself and Nicki, Jessica and James are given the time that we need in relative privacy. There may be some opportunity for people to visit Jessica and ourselves but this will be reserved for only our closest of family and friends.

I have been trying to prepare myself for what lies ahead in this coming weeks but this is proving impossible. I am not ready to let my princess go but I know it is what is best for her, a life of this pain is not a life of happiness. All I can now do is give her comfort and support and help her find her way to the gates of heaven.

I will endeavour to update the page when time allows but our time will primarily be focused on spending time with Jessica, literally treating each day like it may be her last.

Thank you in advance for your understanding of our privacy.

From a heartbroken daddy.

October 29th, 2016

As a photographer it is important to capture the truth and the reality of a situation, too easy it becomes to capture the joy of life whilst discarding the torture that we see.

This is the hardest photograph I have ever made, it is in fact my own four year old daughter. A few days ago she was given what is most likely only a few weeks to live after a battle against cancer that has been waged for over twelve months. This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away whilst she rode out this searing pain in solitude. This sadly, for us as a family, is not a sight that we see rarely. This is now a familiar sight that we see regularly through each day and night, its frequency now more often. This is the true face of cancer, my baby girls blood vessels protruding from beneath her skin, a solitary tear running down her cheek, her body stiffened and her face contorted in pain.

I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in it’s context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.

The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.

If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.

Please I beg of you, as a heartbroken father, it is too late for my daughter, but childhood cancer needs to be cured. No family should have to go through this hell.

November 1st, 2016

Well that was a surreal telephone call...

An unknown number I answered for it to only be HARRY STYLES ringing from USA!!!

He wants to do a FaceTime or video recording for Jessica! The way she is at the moment I have told him that she would benefit more from a recording which he has said he will do for her and email to us!

November 2nd, 2016

The heart wrenching photograph I shared of Jessica a few days ago has today been publicised by the Daily Mail. I am ecstatic that a national newspaper with such a large readership has decided to share Jessica's story to try and highlight Jessica's story and more so the plight of childhood cancer. More needs to be done and if this picture and story can further research and peoples understanding of this hell than that will be some positivity to come from this.

November 2nd, 2016

Well I think finally today we are all starting to recover from the emotional hardship of the party we had for Jessica on Sunday. It was a party that in the build up to it we were extremely looking forward to but one that on the day I was beginning to dread due to its nature.

I am not afraid to say that as I set off in the car on Sunday I had a tear in my eye and on several occasions had feelings of turning around and going home instead. The party was a celebratory party for Jessica but in a way it had a sense of a farewell party, myself knowing that Jessica will never attend another party.

Jessica had been of mixed feelings of the party on the final few days of the run up, at times wanting to attend and at others being apprehensive of it, preferring the comfort of her nightwear and her comfortable home surroundings. On the day itself though she was excited as we drove to the venue but unfortunately as we were close by suffered from some excruciating pain and we had to give her pain relief to comfort her, this of course would also make her a little spaced out and very drowsy.

She was overwhelmed as we entered the venue, many guests already there and immediately chose to sit in comfort by my side in the area set aside for her. This would be where she would remain for the rest of her time at the party barring for a few occasions of me taking her outside for fresh air. On several occasions I asked her if she would like me to take her home but her determination to stay was evident and so I sat beside her and comforted her as she watched the goings on.

It was a fantastic event and one that sadly I had to leave early from with few goodbyes as her pain became too much and I had to get her home, much to her relief by this point, leaving Nicki behind with James to entertain all that still remained.

I can only apologise that I did not manage to speak to many people on the day as I was pre-occupied keeping Jessica in comfort. It was an amazing turnout and a great show of love for Jessica who was spoilt with all her gifts.

The day actually broke me with how much love there is for Jessica and showed me just how frail my emotions are at this moment in time. On many occasions I was reduced to tears by the slightest of things, trying my hardest to keep Jessica from seeing these tears.

There are so many people that deserve our thanks for helping to make it the day it was, in all honesty too many to actually list for fear of missing people out. All I can say is thank you! So much of the day was of no cost to us, people giving their time, services and products free of charge. It was an unbelievable success and I will never forget those that made the day the success it was.

November 4th, 2016

An informative and interesting read published by The Telegraph recently...

"The problem is one of perception. Funding is dished out according to logic, but this logic is based on a partial picture. The “big four” cancers: breast, prostate, lung and bowel, affect thousands of people each year– and attract many more thousands in funding. Children’s cancer research attracts a tiny proportion of the money available from big funders because of its rarity: based on data collected by the National Cancer Research Institute, out of total cancer funding of just over £3,000 million, some £83 million is relevant to childhood cancer – so just under 3 per cent.Yet, as a cause of death in children, cancer tops the list as Grim Reaper-in-chief: one in 500 children in the UK will develop some kind of cancer by the age of 14, and around 250 children die of cancer every year. Looked at this way, the picture is inverted. Cancer in children no longer falls to the bottom of the list, it is right at the top: a major threat, a vital priority."

This is why I published the picture of Jessica a few days ago. If its publication, which has now been published by news outlets worldwide, attracts attention to this plight then it will have done its intended purpose.

November 6th, 2016

Jessica's blood levels have deteriorated quite significantly over this last couple of days, a lot quicker than we anticipated, to the point now where her breathing is slow and laboured and her heart rate increasing to try and get enough oxygen to her most needed areas. Because of this we now know her time remaining with us is sadly limited.

We as a family have been overwhelmed by the recent comments and messages we have received, so many in fact from all over the world that we have been unable to read many of them as we care for Jessica.

We will now be completely but temporarily stepping back from all social media so as to have no distractions as we comfort Jessica during whatever time she has left. We are all understandably heartbroken that our attempts to give her additional extra time combined with the quality of life that she deserves have not worked and I thank you all for the various suggestions to manage this disease recently.

Please as a family I ask that you respect our privacy in these final times. We have so far been very public to try and raise awareness of this disease and thank you all for your support and sharing of Jessica's story. Now is the time that we ask for privacy whilst this journey comes to an end.

I am in tears as I write this, not wanting but understanding the end is near. We have always wanted to do what is best for Jessica and we believe that in now stopping all but the pain management that is now at a level to give her comfort we will give her the most comfortable and dignified passing.

Once more I thank you for your comments, messages and fundraising attempts. As and when time allows we will choose a charity close to ours and Jessica's hearts to assist in the research of this disease so hopefully in future fewer children and families have to suffer this same fate. At the same time the GoFundMe page is in the process of being ended to allow us to look into these said charities and choose which will benefit paediatric research the most. We will also look to publish the chosen charities in future so that any further donations that people wish to make in honour of Jessica can be made directly to them.

Thank you for being a part of this journey. After Jessica's passing the page will remain to be updated to act as a memorial to Jessica whist also serving the purpose of hopefully furthering our attempts to increase awareness to childhood cancer and ultimately hopefully a change in funding to the research that is much needed.

Click the logo for link to petition site.

November 8th, 2016

Jessica and ourselves have had several visits this last couple of days from our Macmillan nurse, the hospice team and the local community nursing team. They have been checking on how she is doing and although she is comfortable it is shared belief that she is now deteriorating significantly.

Jessica's days have almost become her night time and her night times her day times. I was up with her until 04:30 this morning as she watched films whilst occasionally drifting in and out of sleep. The nursing team have said that it is quite normal for this flip of day and night and it will probably continue to be that way. She sleeps what is most likely around seventy-five percent of the time with her best hours being the middle of the night.

Her breathing is becoming even slower, sometimes ten or fifteen seconds pass before she finally takes in a breath, a sight that makes mine and her mummy's heart skip. She still has little to no control over her bladder and bowels, frequently having accidents causing her further upset.

It is heartbreaking for us to watch as her body fights defiantly puts up a fight to this disease. We have been told to expect to see her sleeping more and more this next few days as different parts of her body begin to shut down so that the vital areas get the oxygen and the energy they need.

We are now spending all of our time home with Jessica, allowing only our parents and medical professionals to come and visit as she does not have the energy or the want to see anybody else.

I mentioned the other night that we would not be posting any further updates at the moment but Jessica is currently resting and I wanted to post up the attached petition. We have over eighty thousand likes on this page now and I would like to ask a favour of all who can partake, please please please sign the attached petition. Once the petition gets one-hundred-thousand signatures it will trigger a parliamentary debate. As we have mentioned previously our aim now is to get childhood cancer to the forefront of research, to try and help make breakthroughs in treatments so fewer families have to go through this journey.

Thank you in advance for taking time to look at this petition.

Click logo for link to charity website

November 10th, 2016

We are still receiving messages via GoFundMe and through Facebook asking if people can still donate to Jessica now that we have closed the fundraising page.

As has previously been stated we closed the page that was originally set up to provide comfort to Jessica and to help us say our goodbyes. We now want to look at and check the work of charities which help to fund research in to paediatric cancer. We have of course only been spending our time with Jessica and doing little else but comfort her but I do know of a charity that we have been aware of for the last thirteen months. I have previously looked at their work before and as such in the interim of us doing further research I am happy to direct people to www.neuroblastoma.org.uk.

This charity is close to our hearts due to the work they are doing for the same cancer that Jessica has. I would ask if anyone still wants to donate in honour of Jessica that you do so to them. All childhood cancers need further research and we will look at other charities when time allows but for now this is one that I personally back. I have also informed any media outlets that are still looking to feature Jessica to publish this charities details as they are actively fundraising.

Thank you.

November 11th, 2016

Good evening to all. I know that some of you are awaiting of updates on Jessica and have been asking of her so whilst she rests, here it is...

Jessica has shown quite dramatic deterioration over the course of the last few days. Although myself and Nicki see this deterioration it is more noticeable to those that only see her every few days such as the Macmillan nurses. This afternoon our Macmillan nurse came to have a checkover of Jessica and to check on mine and Nicki's wellbeing. She is happy with the comfort levels of Jessica and is amazed at her resilience but has today pointed out the tell-tale signs that Jessica is showing that the end is near.

Jessica is now spending ninety-percent of the day in the comfort of her bed with me and Nicki staying by her side in turns or together. She is now no longer touching food at all and drink is being consumed in only small amounts. Some of her symptoms I am not prepared to go into the details of, not needing or wanting to but they are heartbreaking for me and Nicki to witness.

I think that what is worse than witnessing some of the horrendous symptoms is the fact that we now cannot even cuddle or hold her such is her not wanting physical contact for fear of pain. The only time I get to hold her now most often is if I carry her up or down stairs. Barring for that I can only rub various parts of her body that are giving her the most pain at that moment in time in a hope to comfort her.

I cannot put into words how hard it is to watch her and listen to her worsen as each day passes. She offers us very little in the way of conversation now, her energy too little, but a phrase that I think will haunt me now for a lifetime is "Oh my gosh". I cannot tell you how many times I have heard her repeat that phrase now as she tries in vain to muster the energy, the strength and the will to move even the slightest of ways.

She has today started to be sick quite frequently, a sign that she is possibly not tolerating or digesting her oral pain relief as effectively as before. If this continues or indeed if her pain becomes uncontrollable we will have to resort to a subcutaneous diamorphine infusion so that the pain relief can enter her bloodstream directly. We have all the drugs and the pumps here at home already so if this is the case our palliative care team can come immediately and start this infusion with little delay.

From mine and Nicki's point of view we are still hopeful to keep her in the comfort of our home in her final days but only if it is not to the detriment of Jessica's comfort and wellbeing. She is definitely more settled at home but only whilst we are managing to cope. If we can no longer manage then we will have to make our way to the hospice that is covering us at the moment.

Today I made what is possibly my hardest phone call so far, a call to the funeral directors of our choice. I broke down more than once as I spoke to the director about our plans for Jessica's goodbyes. Never before have I had to arrange a funeral, never before have I lost anybody so close to me. That phone call broke me as I started to put in motion the preparations for what will be our final goodbye.

November 12th, 2016

After our update last night regarding Jessica's condition she started to suffer quite badly. Firstly with anxiety, then with regular uncontrollable sickness followed by an increase of pain.

It became quite apparent that her stomach has now all but stopped digesting which now makes her oral medications useless. I was up with her all night, not sleeping at all, fearing for her wellbeing but also not wanting her to feel alone, especially if it was to be her final night with us.

When everything became unmanageable and all our options were exhausted we contacted our palliative care team to come out to Jessica. We administered a sedative that we ourselves can give so that she could be calm whilst our palliative care team arranged and concocted a medicine tailored for her needs. This now to be given by a twenty-four hour continuous infusion pump, a needle in her thigh allowing the medicines to go directly into her blood stream.

Almost instantly after giving Jessica the oral sedative she calmed and gripped my finger tightly as she drifted off to sleep, moments like this now cherished more and more. She felt very little as the subcutaneous needle was put in place and the infusion pump started. Since then she has slept a lot, a combination of tiredness and the new medication allowing this comfortable rest.

The infusion she is on is a combination of three medicines... An anti-sickness, morphine and a mild sedative. This now seems to be working a lot better than the oral medications were recently, the sedative at a level to not completely sedate her but enough to remove her anxiety.

This evening the palliative care team have returned as she has still been whinging a small amount in her sleep so they are increasing the amount of morphine further still as well as also making a slight increase of sedative. Thankfully this is the most comfortable I have seen her in a couple of days and she is now more respondent to at least me, now wanting me to cuddle up beside her again, to rub her aches and pains, to hold her hand.

Hopefully now that the tweaks have been made to this new medications Jessica will have a more settled night and a more peaceful and comfortable passing whenever that may be.

November 18th, 2016

Well Jessica is defying all the medical professionals opinions and is still fighting!!!

Countless days we have been told that she is showing another sign that the end is near, countless days we have been advised to not leave her side and constantly we have kept a bedside vigil and yet she still fights on!!!

Technically in medical terms she actually shouldn't still be alive, she has virtually no haemoglobin and hardly any platelets amongst various other issues. Her body has all but given up, no strength to be able to even hold her own head up. Still though she fights! I have to physically move her entirely now, moving her to alleviate pressure spots, moving her back into position in the bed as she slides down every so often.

Her body has given up but her head most certainly has not, not in the way of grit determination anyway. I am actually saddened by her fighting spirit though as it is this and only this that is keeping her alive. Some may find it hard to comprehend that I am saddened by this fight to keep herself alive but if you saw her you would understand.

In terms of muscle and fat, she has none at all, so little in fact that you can make out individual bones throughout her body, both seeing and feeling them. So little strength that when I move her limp body I have to physically prop her head up as she cannot manage even this. Her massive tumours are hard to touch, highly visible and protruding from all over her now tiny frame. She is almost transparent the amount of colour she has lost through such little blood being present. She is cold to touch such is the lack of circulation around her body, in fact to touch her hands you could be forgiven for thinking she wasn't alive such is her coldness. Her breathing is slow, heavy and laboured, sometimes with a whimper after each breath taken. Often it is her diaphragm doing her breathing and not the chest muscles such is her lack of strength and energy.

She still has a determined independence as she musters all of her energy to firstly mumble almost incoherently that she wants to hold her juice and secondly as she tries to lift the cup to her lips, her grip faltering as she repeatedly drops it. Still though she is insistent she will do tasks like this with little help from us.

Jessica has now not left the bed since Thursday of last week, lying instead almost motionless in her bed beside ours. She is on huge amounts of morphine to try and keep the pain at bay whilst also now being heavily sedated to keep her calm due to anxiety caused by a lack of breath etc. Me and Nicki have tried various ways to give her the comfort for her to finally pass away but for whatever reason Jessica is deciding that it is not yet her time to leave this world.

It's a nightmare to watch and I cannot even begin to imagine what Jessica is going through. I cannot even begin to explain how truly horrifying it is to witness as her parents.

As much as I want an eternity with my beautiful princess, I only want eternity if it is with quality. This life now is nothing but cruel to Jessica and I hope she soon finds the comfort she needs to leave this cruel world behind and to shine down on us all.

I love you so much Jessica and I don't want to let you go but seeing you fight this horrendous disease shows me that this world is just too evil for you to stay any longer. Close your eyes one last time baby girl, leave this cruel world behind and watch down over your little brother.

November 20th, 2016.........06:07 am

Last night, although painful for me, was amazing!!! Finally after over seven days of hardly being able to go near my princess I was able to pick her up in my arms and cradle her frail and tired form.

Every day has been a battle to get her and keep her comfortable using pain relief and sedatives. Through all the pain relief and sedatives she has still not had the comfort to allow me to do anything more than rest my hand upon her, perhaps hold her hand and occasionally kiss her dried pale lips.

Last night however we managed to get her body to absorb enough of the medicines that this time when changing her bedding, instead of having to merely move her onto our bed, Jessica actually let me and seemed comforted to have me pick her up and rest her on myself for around twenty minutes or so. I can honestly say it was probably the best and most cherished cuddle we have shared in a long time.

To be able to finally wrap my arms around her, hold her close to me and have her head resting on my chest brought tears to my eyes. I told her countless times how much I loved her, kissed her forehead numerous times and told her to close her eyes and go to sleep. I truly did not want to lay her back in her own bed once it was made but eventually had to do so.

Holding her close I found a sense of guilt in my happiness to hold her. I cannot even begin to comprehend the pain that must tear through her body which has stopped us from being close to her in previous days. Me selfishly wanting to hold her to try and comfort and feeling aggrieved at being pushed away.

I really do hope the end is near for her now. Last night on lifting her to change her bedding and bathe her we found sores on her back not previously there only a couple of days ago. So frail is she now that these sores are now open wounds, weeping and bloodied. She does not feel them due to her medication but they are horrific to see. As I lay her back down, after applying creams and dressings, I tried to rest her on her side, as she had lay on me. Alas though she quickly became uncomfortable from her tumour growth and had to find comfort once more on her back.

I hope this cuddle gave her enough comfort to know that we are happy and ready for her to leave this world. I cannot even imagine how much more her frail body can take.

November 20th, 2016 ...9.43am

I feel both sadness and relief in informing you all that Jessica finally found peace at seven o’clock this morning. No longer does she suffer, no longer does she feel the pain of the physical constraints of her body.

Now my princess has grown her angel wings and has gone up to play with her friends and loved ones. She will now watch down over her little brother and ourselves until one day we are reunited again.

Last night she finally allowed me to hold her in my arms and we had a big cuddle as I told her how much I loved her. I told her again that it was okay for her to close her eyes and go to sleep and I kissed her forehead and her lips numerous times. It seems like this is what she needed to finally allow her to find comfort in her passing as within eight hours of this cuddle she finally took her final breath. She was a daddy’s girl from the start and even right up to the end. I feel like a massive part of me has just been torn away but I am so glad that I could give her that comfort in her final hours. She passed peacefully and calmly with not even a murmur.

Thank you to everyone of you who has shared and has been a part of our journey. I ask now for privacy for us and our family as we mourn the loss of our beautiful princess.

From a heartbroken daddy of the most amazing and beautiful girl.

Mark ShirranTonight, we have lit a candle in Jessica's memory. Tomorrow, we must find the strength to continue our own fight for our one year old son who is also fighting high-risk neuroblastoma. But for now, we only have tears for your loss. RIP beautiful little princess. Know that you have touched many many hearts across this world of ours.

November 20th, 2016.......... 12:25 pm

Fly high my beautiful princess, watch over me, mummy and James. Ride free on horses in heaven and enjoy being with loved ones and free from your pain.

I will never forget you and I am honoured to call you my daughter. I love you more than words can convey, much more than you will ever know.

Goodnight Jessica Mae, sweet dreams, rest in peace.

I am not ready to let you go Jessica, you are my little princess. You are the most amazing, strongest and bravest little girl and I am blessed to be your daddy.

Never again will I hear your joyful cry out of "Daddy!!!" as I walk through the front door, never again will I hear that infectious giggle of yours as you mischievously climb and jump all over me, tickling me as we play fight.

I have so many wonderful memories and yet so few as you were taken far too young. I should be led here planning our next family trip not led here planning your funeral. I should be led here singing alongside you your favourite songs not adding them to a playlist to be played as we say goodbye to you.

The bond me and you share is truly amazing, you always were a daddy's girl, often only calming when I wrapped my arms around you. I'm sorry I couldn't protect you from this evil world baby girl, I'm sorry you had to suffer the way you did. It breaks me to think about what you have had to endure for a quarter of your short life and it will be a cause of my nightmares for me for years to come.

I miss you so much baby girl, I miss your voice, I miss your smile, I miss you wrapping your arms around my neck as we cuddle. I miss your spontaneous statement of "I love you Daddy", a statement you came out with several times daily. I miss you Jessica, tears rolling down my cheeks and wetting my pillow as I think of you and the bond we shared.

Well yesterday was an extremely long and hard day. When Jessica passed on Sunday morning we decided to keep her at rest at home, moving her back into her own bedroom to allow her one final night in her bedroom. I dressed and moved her on Sunday after she passed and I found it to be very hard emotionally in doing so. That though was a small task in comparison to yesterday.

Yesterday morning at 11:30 the funeral director arrived at ours to collect Jessica and to take her to repose in their care whilst also allowing the post-mortem for tissue and organ donation for research. I decided that I could not allow anybody to carry my princess out of our family home and I felt that it was my duty as her daddy to do it myself.

I held back the tears as I lifted her body from her bed, wrapping her in her favourite pink blanket leaving just her face exposed, almost like you would with a new baby. I carried her carefully out of her bedroom and down the stairs, my legs shaking as I felt so weak but yet keeping strength and composure through determination to do right by Jessica. As I reached the front door both myself and her mummy took a moment to give her a final kiss and say our goodbyes before I carried her out to the waiting car.

As weak as I felt when doing it and as numb as I felt after the event I am glad that I was able to carry her from her bed, not wanting it to be a stranger with whom she made this final journey but instead the arms of her daddy.

November 22nd, 2016

Well it's a busy day for us today. Yesterday we met with the funeral director to start making plans for our final goodbye to Jessica.

It was extremely emotional sat with him discussing what will become the finality of this long journey. A lot of tears were shed as we got into the details of this goodbye. The hardest part of this meeting by far was choosing the coffin that Jessica will be carried in. As parents we should not have to make these choices, it should be Jessica in many many years to come that is planning our funerals, not us planning hers.

Today we have to take our choice of dress for Jessica to be dressed in for this final part of her journey. Looking through her wardrobe at all her beautiful dresses, each one with its own special memories attached, the one we choose soon never to be seen again.

Hopefully by the close of today we will have the main parts of her funeral arranged. We have had a call from the local police who are coming to visit us this morning to make arrangements of their involvement in this day. Jessica captured the hearts of many local officers as documented in her journey and they wish to play a part in her farewell.

At lunch time today we must return to the place where nearly five years ago we sat with Jessica, at that time a cute baby of only a few days old, to register her. This time however Jessica will not be with us, this time we will not leave the register office full of excitement for the life ahead, this time instead of a birth certificate we will leave with certification of her death.

After lunch we are going to view what will hopefully be the venue for our celebration of Jessica's short life after the finality of the church service. We will also be making arrangements for our choice of flowers to accompany Jessica on this day of her life. Details will be released in due time but as a family we are requesting that instead of friends offering flowers for Jessica, people instead make donations through our funeral directors to two chosen charities that have helped us and Jessica greatly.

I would like to thank all who have left comments and sent messages to us, too many for us to read fully and to reply to but a lasting memorial to Jessica that in time we can look over to find comfort in how far she has reached in her short time on Earth.

November 23rd, 2016

Jessica's funeral will be held on Monday 28th November at 10:45am at Saint Mary's Roman Catholic Church, Catlow Hall Street, Oswaldtwistle.

We have been touched by people's wishes to join us in saying goodbye to Jessica and although family and close friends take priority in the church, all who wish to attend are more than welcome to join us.

Flowers to accompany her on her final journey are being provided by ourselves and Jessica's grandparents. Anyone else wishing to provide flowers etc. we would instead ask to donate money through the funeral directors to our two chosen charities.

After the church service there is to be a short service at Accrington crematorium and although people are welcome to pay their respects as Jessica arrives here I would ask that it is only family and close friends by invite who attend this service as this is a chance for our private and final goodbye.

Following on from the crematorium there will be a celebration of Jessica's life but again this is something that we wish to keep private between our family and friends.

The amount of love that Jessica has been shown is truly humbling and it is for this reason that we as a family are happy for people to join us for this public church service or to pay their respects as we arrive at the church and crematorium. Obviously though this is our little princess and it is only right that our family and friends get the chance to say goodbye and celebrate her life in relative privacy.

Thank you xx

November 24th,2016

Today me and Nicki finally got to see Jessica for the first time since I carried her out of our family home on Monday morning.

Finally she is back from Manchester where she had a post-mortem to allow removal of tissue for research. The funeral directors have worked their magic on our princess, washing and styling her hair, dressing her and taking care of the little details.

Both myself and Nicki were so scared when we arrived to see her this afternoon, not knowing what to expect since we last saw her. Our fears were quickly gone as we were led in to the room that she rests in. She looks so beautiful and so peaceful led comfortably in her pink coffin, her favourite pink blanket keeping her snug, her head resting on a heart shaped Disney Frozen pillow.

We both took turns in holding her hands, kissing her and telling her how much we miss her and how much we love her.

Neither of us wanted to leave her there alone, especially knowing our time to actually hold her hands, give her a kiss and rub our noses against hers is now very limited. In only a few days time the only thing we will have left is our memories, photographs and her belongings, gone will be her physical being.

I still can't believe this is real, the expectation of this actually happening not bringing any comfort now. Our bedroom feels strange now not having her bed beside ours, her room feels cold as I walk in and see all her toys and belongings but Jessica is nowhere to be seen. My sleep patterns have become more normal in that I now once more sleep at night and wake for the day but sleep is broken and little. I keep expecting to wake in the night to Jessica telling me her film has finished and to find another for her to watch, such was her final few weeks. A lump was brought to my throat first thing this morning as James came into our bedroom and upon seeing a picture of Jessica started repeating her name but fortunately I was quickly able to distract him, far too young to be able to understand what has happened to his big sister.

November 26th, 2016

From the moment I first held you I knew you were special. The most beautiful and precious being I had ever laid my eyes upon. Instantly you taught me the meaning of true and unconditional love. In those first moments I promised to protect you and always be there for you, I did what I could but you were needed elsewhere.

In your short life in this world you inspired me to better myself for the betterment of your life. You have done more in your near five years on this earth than I can hope to do in a lifetime and you have inspired more than just myself.

I hope you are having fun now my princess, I hope that you are playing the way that you should have been able to on this earth. I know that you will always be with me, a piece of my heart forever owned by you.

Sleep tight my angel, I am here for you whenever you need me. I think of you daily and your legacy will forever last. You made me the person I am today and I am blessed that you were mine for the brief time you were here.

No words will ever truly convey how much I love you and how much you mean to me but know this baby girl, soon we will be reunited and this time I will never let you go. For now watch over me, your mummy and little brother, our physical beings separated from you but our souls still together.